Asia Pacific Disability Rehabilitation Journal

Transcription

1 DEVELOPMENTAL ARTICLES Asia Pacific Disabiity Rehabiitation Journa PRIMARY HEALTH CARE AND COMMUNITY BASED REHABILITATION: IMPLICATIONS FOR PHYSICAL THERAPY Tracy Bury* ABSTRACT The Word Confederation for Physica Therapy (WCPT) is committed to the deveopment of Primary Heath Care and Community Based Rehabiitation (CBR). The number of disabed peope is increasing steadiy with ony a minority receiving accessibe and appropriate rehabiitation services. The terms primary heath care and community-based rehabiitation are open to interpretation, athough internationay recognised statements/ definitions exist. The genera concepts and principes invoved are generay agreed wordwide but the nature of services referred to by the terms varies internationay. There is a need for a stronger orientation towards rehabiitation in primary heath care services, baanced with the current emphasis on heath promotion and disease prevention. Heath care systems vary wordwide; this requires a fexibe, responsive and innovative approach to deveoping services that are refective of oca needs, environments and avaiabe resources. Physica therapy provision is insufficient for the needs of most countries, therefore service deivery modes need to be deveoped that resut in the skis and knowedge of physica therapists meeting the needs of a higher proportion of those in need. Additionay, physica therapy professiona education needs to equip physica therapists with the appropriate knowedge and skis to work in a variety of settings as we as promoting the vaue of working in these settings. Physica therapists and others shoud be aware of the impications of the internationa review of CBR and ready to take appropriate action. INTRODUCTION Heath promotion, prevention, rehabiitation and the socia integration and equaisation of opportunities for peope with disabiities have been accepted poicy for the United Nations (UN) and Word Heath Organisation (WHO) for many years, with an increasing focus on 29 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

2 Asia Pacific Disabiity Rehabiitation Journa primary heath care and community services. Focusing on rehabiitation and primary heath care, community-based rehabiitation (CBR) is one mode of service provision, which WHO has advocated for over a decade (1,2,3). The participation of peope with disabiities, their carers and communities has ong been a guiding principe for heath care poicy deveopment, panning, impementation, monitoring and evauation (4,5,6,7,8,9,10,11,3,12,13), even if it is not quite a reaity wordwide. The Ama Ata Decaration on primary heath care (13) was enthusiasticay received as a means by which Heath for A by the year 2000 (10) coud be reaised. However, it was aso met with criticism that it was unreaistic and too ideaistic (14), especiay from those who perhaps wanted quick fixes and tangibe eary resuts. Internationay there have been different interpretations of what primary heath care is, often as a resut of poitica intent, with a arge number of varying programmes being deveoped in the name of primary heath care. The hope of primary heath care was that it woud address the economic reaity of heath care with an increasing shift to primary disease prevention and heath promotion and promoting sef-reiance. Community-based heath care, by and for the community, encompassing traditiona heath care combined with basic heath services, controed and financed by the government or private institutions, were seen as the integrated systems by which primary heath care coud be achieved (13). Internationa groups such as the United Nations Chidren s Fund (UNICEF) and WHO, aong with internationa poiticians and heath panners, have caed for greater sef-reiance at the community eve with increased attention on prevention. However, this coud be considered to impose a top-down expectation that may not be matched with oca ownership of the concept of sef-reiance (14,15). Some consider that sef-reiance can appear to equate to peope being eft to fend for themseves (14), rather than gaining ownership and a sense of contro. In addition, the aspirations of many deveoping countries for a heath care system simiar to that of deveoped countries may risk undermining sef-reiance, given the criticisms of the medicaisation of heath care in western society (14). Disabiity incurs both economic and socia costs for society, which can be reduced by effective rehabiitation and support programmes (11). Generay, unti now, primary heath care efforts 30 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

3 Asia Pacific Disabiity Rehabiitation Journa have focused on famiy panning, chidhood immunisations, nutrition and AIDS, a of which are important in the prevention of popuation heath probems and disabiity (14). Whie for many communities, primary heath care initiatives that focus on preventative measures wi pay dividends in the ong term, the priority needs of the peope are more ikey to be associated with treatment and rehabiitation where, if services were avaiabe, there is the potentia for immediate effect. A baance therefore, needs to be struck between prevention, heath promotion, treatment and rehabiitation. Rehabiitation has historicay been seen as a ow priority around the word, due to a number of factors (16,17): Cost-benefit ratio of providing services to those with disabiities. Under-estimation of disabed peopes potentia to achieve. Negative societa attitudes towards disabiity. Discriminatory practices. Absence of urgency rehabiitation tends to focus on the chronic, non-communicabe diseases or inesses that do not pose a risk to others. Interest of biomedica practitioners focuses on improvement and cure, which is not aways feasibe or reaistic for rehabiitation or the Cure or Care mode. Pubic poicy is not infuenced by those with disabiities as they represent a reativey sma marginaised minority. Access to appropriate rehabiitation remains probematica. Where services do exist, they are frequenty centred on urban institutions (11). In addition, care is frequenty driven by heath care professionas rather than peope with disabiities, their carers and communities, and therefore fais to address priorities and needs from their point of view. There are many cas to increase the number of heath care professionas avaiabe to provide services, incuding physica therapists, recognising the significant shortfas wordwide. However, there has been imited progress in maximising the potentia of that which is avaiabe for the benefit of the majority of peope in need. The recent internationa review of CBR aimed to contribute to the further deveopment of the CBR concept and its impementation, by identifying the basic eements essentia for effective CBR, through a review of current CBR practice and experience in a variety of settings (4). 31 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

4 Asia Pacific Disabiity Rehabiitation Journa DISABILITY IN A CULTURAL CONTEXT Much has been written that seeks to expore the concept of disabiity and its meaning for individuas and society. In addition, recent deveopments incuding the Internationa Cassification of Functioning, Disabiity and Heath, referred to as the ICF (18), are attempting to redress the negative way in which disabiity has been perceived. Rather than an emphasis on disabiity, the shift is to focus on the abiities of disabed peope. This section gives a brief introduction to the cutura context of disabiity, the infuence of the disabiity movement and different modes that exist in the iterature. It aso highights the human rights and equaisation of opportunities issues associated with disabiity. It is not designed to provide a detaied discussion of the issues, but to stimuate readers to think about them and expore the iterature more. disabiity is defined by cuture, and without an awareness of how disabiity is perceived in the target cuture, a disabiity programme does not stand much chance of being reevant or sustainabe. (19) Disabiity does not define peope, society does. How disabiity is viewed, often refects the extent to which society embraces disabiity and diversity, rather than focusing on how an individua s abiity to participate to sociay accepted norms might be imited. Therefore what is perceived as a disabiity in one society or cuture may not be viewed as such in another (20). The extent to which the focus is on the rights of the individua, versus the needs of the popuation or community, wi aso determine how disabiity is viewed. Whie the cuture of many deveoped countries gives predominance to the individua, the same cannot be said for many deveoping countries (21,14). This is not to say that one is right and the other wrong, but that society has infuenced how rights are defined and needs identified and met. How acquired (especiay accident-induced) disabiity is seen in comparison to congenita, disease or iness-induced disabiity, can be quite marked resuting in inequitabe access to services and opportunities, and often financia support (20). Whie few can argue with the ethics of equitabe heath for a, consideration needs to be given to the ways in which disabiity is perceived in different societies, in response to a 32 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

5 Asia Pacific Disabiity Rehabiitation Journa number of cutura variabes, aong with materiaistic and economic issues. For exampe, different beief systems in some traditiona societies give prominence to fate, karma and divine punishment. These suggest that the person with a disabiity is not in need of intervention, as the disabiity is a resut of the natura order of ife that is not within anyone s contro (19). There are aso the differing responsibiities that the individua assumes, depending on their status in a famiy or community, and the way in which any decisions are made. This is ikey to impact on the extent to which the notion of empowerment (aowing, encouraging and faciitating individuas with disabiities and their famiies to speak and act for themseves) is appropriate or appicabe (22). In many poor communities, disabed peope are not seen as a priority for deveopment and investment, an awareness of this and other cutura issues is key to any process designed to integrate disabed peope more fuy in society (19). Understanding that cuture is the sum of poitica, economic, socia and spiritua aspirations over a period of time, is essentia to avoid aienation, excusion and a oss of identity or sense of community. If changing perceptions and thinking about disabiity is to be stimuated, then it needs to be done without undermining peope s own sense of identity (19). THE DISABILITY MOVEMENT The disabiity in need of charity and disabiity in need of treatment perspectives were chaenged by the disabiity movement (disabed peope themseves) with the emergence of three key ideas: the socia mode of disabiity. independent iving. civi rights movement (23). With the deveopment of these issues, there has come a greater focus on environmenta change for the benefit of a greater number of peope, rather than individua based interventions (23). This has posed chaenges for heath care professionas whose work has been dominated by one-to-one interventions, with Oiver giving the warning in 1983 (24), that professionas must work with disabed peope to deveop appropriate practice, based on the socia mode of disabiity. Consumers initiated the chaenge to professionay controed rehabiitation in North America and other deveoped nations, which ed to the emergence of the Independent Living (IL) 33 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

6 Asia Pacific Disabiity Rehabiitation Journa movement. In this, barriers to access and equaity in service provision were principay identified as environmenta and attitudina, with particuar concern that the professionacient reationship faciitated dependency-inducing features in the person with a disabiity. In the USA and Canada, IL centres deveoped, providing peer counseing, consumer-based research, advocacy and sef-hep (25). There has perhaps been greater progress with socia wefare issues than with rehabiitation, in this approach. This might in part be reated to the way in which independent iving centres (ILCs) were set up by professionas, as opposed to centres for independent iving (CILs) which were set up and staffed by disabed peope (23). The term independence is one that different stakehoders woud agree on, but how it is interpreted varies: Governments see independence as deveoping sef-reiance and reducing the burden on the state. Heath care professionas focus on the abiity of individuas to undertake a range of activities that enabe them to be sef-caring. For disabed peope independence is seen in terms of persona autonomy and the abiity to take contro of their ives (23). One of the debates in the disabiity movement iterature seems to be the issue of power and the answers to two key questions: Who has the right to determine how disabed peope shoud ive their ives; and Who has the egitimate right and voice in determining the priorities for the provision of disabiity services (22)? Answers to these vary within different cutura and societa contexts. Whie the disabiity movement has been critica of the heath care professions, the professions have perhaps istened and begun some fundamenta changes. Through empowering peope with disabiities to be active participants and decision-makers in heath care panning, deivery, individua treatment programmes and service evauation, they have acknowedged that peope with disabiities are not passive recipients of perceived professiona wisdom, knowedge and skis. A partnership mode is therefore being progressed by a those invoved. These are important deveopments to take heed of, in considering the roe of physica therapy in any heath services deivery mode. 34 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

7 Asia Pacific Disabiity Rehabiitation Journa MODELS OF DISABILITY Another key debate concerning disabiity is the way in which the medica and socia modes of heath have often been presented in opposition, as summarised by Lang (22). It woud seem that in the context of disabiity neither mode provides a compete approach and that an integrated approach, encompassing eements from both modes wi best serve to meet the needs of peope with disabiities, their carers and communities. This wi faciitate participation and contribute to the process to change the socia parameters of individua existence (26). This integrated approach does appear to have been recognised by WHO (4,27,12). Human rights Heath for a and the equaisation of opportunities, aong with access to rehabiitation deivered in a cuturay and sociay sensitive manner, can be seen as basic human rights issues (26,6,8). Coe argues that the essentia human right is the right to progress, achieved through the faciity and abiity to choose and participate in processes of socia change (26). Ensuring that those with disabiities enjoy a aspects of human rights, is embedded in internationa egisation and aso widey at a nationa eve. This means that the rights-based approach to disabiity is subject to aw. The approach is designed to empower disabed persons, and to ensure their active participation in poitica, economic, socia, and cutura ife in a way that is respectfu and accommodating of their difference (28). The extent to which nationa impementation makes this a practica reaity, is variabe. The human rights approach sees the probems of disabiity stemming from within society, not the individua. The existing order of society, and the consequent aocation of scarce resources, necessariy engenders inequaity, which refects the power structure of society. This socia status quo is ideoogicay justified, egitimating priviege. And hence any effective anaysis of the socia position and human rights of persons with disabiities in particuar, and disadvantaged peope in genera, and the resutant questioning of the aocation of resources, wi have to address the inadequacies of the extant institutiona order. And hence raise questions about the ideoogica and cutura basis of socia ife. (26) 35 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

8 Asia Pacific Disabiity Rehabiitation Journa In the context of internationa egisation there are a number of United Nations documents setting out internationa standards on human rights, aong with a number of resoutions and decarations. The majority of this egisation does not specificay mention disabed peope, except for the Convention on the Rights of the Chid and the Standard Rues. There are however, antidiscrimination causes in pace. Whie a the reevant human rights treaties have significant potentia to improve the situation of disabed peope, it appears that they are under-utiised (29,28). The core vaues of individua dignity, autonomy or sef-determination, equaity and the ethic of soidarity are fundamentas of human rights aw that concern disabiity. To achieve this there is an increased focus on the participation and invovement of disabed peope and their representatives, incuding Disabed Peope s Organisations (DPOs) in the deveopment and impementation of poicies and pans (28). To focus on how services are deivered and by whom, risks faiing to integrate the person with a disabiity in society. It fais to address the barriers to participation, so that whie they might receive appropriate equipment and improve their mobiity they may, for exampe, sti be refused a job. Whereas, an approach that recognises the rights of disabed peope and puts in pace comprehensive integrated poicies and strategies to address these, is more ikey to fufi these human rights. Providing rehabiitation and equipment woud be ony one part of this (30). Specificay in reation to CBR, the revised internationa position statement on CBR (4) now paces CBR within a human rights framework with reference to the Internationa Covenant on Economic, Socia and Cutura Rights and the United Nation s Standard Rues. PRIMARY HEALTH CARE AND CBR The Ama Ata definition of primary heath care is the one to which governments have pedged their aegiance and it is this which has shaped the deveopment of nationa poicies. 36 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

9 Asia Pacific Disabiity Rehabiitation Journa Primary heath care is essentia heath care based on practica, scientificay sound and sociay acceptabe methods and technoogy made universay accessibe to individuas and famiies in the community through their fu participation and at a cost that the community and country can afford to maintain at every stage of their deveopment in the spirit of sef-reiance and sef-determination. It forms an integra part both of the country s heath system, of which it is the centra function and main focus, and of the overa socia and economic deveopment of the community. It is the first eve of contact of individuas, the famiy and community with the nationa heath system bringing heath care as cose as possibe to where peope ive and work, and constitutes the first eement of a continuing heath care process. (13). Primary heath care focusses on: maximum use of oca resources, incuding traditiona heaers and trained community heath workers. participation of the individua and the community. affordabe and accessibe care. integration of prevention, promotion, treatment and rehabiitation. coordination between the heath care sector and other aspects of society, such as housing and education (17,13). Rehabiitation personne, incuding physica and occupationa therapists and mid-eve rehabiitation workers, have been identified as being we-paced to faciitate the prevention of tertiary disabiity, whereas physicians and nurses are perhaps more famiiar with primary and secondary prevention (3). However, physica therapists have a vauabe contribution to make across a eves of prevention. To ony see their roe at the tertiary eve poses the risk of increasing the number of individuas with this eve of disabiity requiring this type of care, rather than seeking to prevent them with earier intervention. Rehabiitation, in some instances, has been seen as a service deivered by heath care professionas, a key domain of therapists. However, as O Tooe stated: Rehabiitation can no onger be seen as a product to be dispensed; rather, rehabiitation shoud be offered as a process in which a participants are activey and cosey invoved. (31) 37 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

10 Asia Pacific Disabiity Rehabiitation Journa The recent pubication of Innovative Care for Chronic Conditions: Buiding Bocks for Action (32), goes some way towards redressing the imbaance in service deivery that has evoved with many primary heath care initiatives. This paces greater emphasis on the need for heath services to meet the needs arising from chronic conditions, much of which coud be met in the community. This needs to be baanced with the needs for primary prevention a key driver in primary heath care, as described earier. Another view of primary heath care that emerges from a consutation exercise undertaken by the Word Confederation for Physica Therapy (WCPT) with its Member Organisation, is the extent to which it equates to first contact practitioner status. For exampe, that cients do not need a medica referra to receive care from a physica therapist, but can consut them directy. In this instance, that care can be provided in acute, primary and community settings. In the context of this paper, primary heath care is seen to refect internationa poicy and therefore services, that are provided in the community. CBR was designed as a mode by which cost-effective community / home-based rehabiitation coud be provided in deveoping countries (1). As defined, it was not seen to equate to a rehabiitation that takes pace outside an institutiona setting, athough it is easy to see how the term can be interpreted as such. CBR, as internationay defined, is very much cientcentric as opposed to profession-centric. In trying to carify what CBR is and to draw a distinction with any care that takes pace in a community environment, there are a few key points. CBR is not: An approach that ony focuses on the physica or medica needs of a person. About deivering care to disabed peope as passive recipients. Ony outreach from a centre. Rehabiitation training in isoation. An approach which is determined by the needs of an institution or groups of professionas. Segregated and separate from services for other peope (30). Conversey CBR invoves: Partnerships with disabed peope, both aduts and chidren, their famiies and carers. Capacity buiding of disabed peope and their famiies, in the context of their community and cuture. 38 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

11 Asia Pacific Disabiity Rehabiitation Journa An hoistic approach encompassing physica, socia, empoyment, educationa, economic and other needs. Promoting the socia incusion of disabed peope in existing mainstream services. A system based in the community, using district and nationa eve services for referra (30,33). CBR has been described on the basis of component features such as: provision of functiona rehabiitation services. creating a positive attitude towards peope with disabiities. the creation of micro and macro income-generation. vocationa training. the prevention of the causes of disabiities (34). It has aso been described on the basis of phiosophica or ideoogica thinking (15). Heander (35) has identified a number of key principes reating to CBR. They are; equaity, socia justice, soidarity, integration and dignity. These can be seen to reate to the principes embedded in human rights egisation. As one aspect of its broad remit, CBR is a means of deivering heath services in the primary heath care setting and therefore the two are intrinsicay inked. CBR is not an approach that ony focuses on the physica or menta needs of a person and as such extends beyond the heathcare domain. However, it is aso viewed by some nations as encompassing a care that takes pace in the community, more anaogous with the wider concept of primary heath care. CBR is not the ony means by which rehabiitation services can be deivered in primary heath care settings. Both CBR and primary heath care, focus on the needs of individuas and the wider popuation. It is important though to understand that rehabiitation in the context of CBR extends beyond a purey medica interpretation as discussed. HEALTH SERVICES DELIVERY WHO s decaration of Heath for a by the year 2000 (10) sti remains a ong way off. In 1995, the Word Heath Assemby (resoution WHA 48.8) urged WHO and its member states to take coordinated action to reform heath care, acknowedging that fundamenta change was required in approaches to heath care deivery, the use of human resources and their education and training (36). 39 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

12 Asia Pacific Disabiity Rehabiitation Journa Differences in heath status and heath care systems, incuding rehabiitation, are significant from one country to another. However, they are most marked when comparing the deveoping countries with those that are deveoped. Whie the socio-economic differences are acknowedged, the continuay widening economic gap is seen to be the principa infuencing factor (17). Even though the economic resources required to provide a eve of service that even goes some way to cosing the gap between met and unmet need, seems far from reach, as Kay et a said Deveoping nations can i-afford the expense of the morbidity that a faiure to rehabiitate causes. (37). That said, eves of morbidity tend to be higher in poorer communities and, depending on the oca heath care system, this means that they end up paying more when they can i-afford to do so (38). Within countries there are usuay a number of referra eves (figure 1). Starting with community eve services, there is then access to district services, where district is defined as the area covered by the first-referra eve hospita and aso the most periphera unit of oca government and administration, with comprehensive powers and responsibiities. It is seen to exist at the interface between community panning and deveopment and centra government panning and deveopment (39,2). There is then a second-referra eve to provincia / regiona / state services. These services, as we as providing a greater eve of expertise, aso provide education and supervision of rehabiitation workers at the district eve. Some specia schoos and vocationa training centres may aso be ocated in these areas. The third eve of referra is referred to as centra or nationa services. Exampes incude speciaty or teaching hospitas in arge urban areas (39,2). Figure 1: Referra Leves 40 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

13 Asia Pacific Disabiity Rehabiitation Journa This description of services may be more recognisabe in deveoping countries but a countries have an anaogous system of increasing compexity, speciaisation and muti-sectora coaboration. Modes of rehabiitation Institution-based rehabiitation and outpatient services are modes recognisabe to most heath care professionas and the ones that have historicay infuenced education provision. These services have been driven and deveoped by heath care professionas. Heath care reforms are seeing an increasing emphasis on service user invovement in shaping future modes of heath service deivery. However, this remains a reativey new concept and one in deveopment itsef. In most countries institution-based rehabiitation is urban-based, making it reativey inaccessibe and expensive to access, especiay in poorer communities. How disabiity has been perceived has infuenced heath care service provision, incuding rehabiitation. The disabiity movement and the deveopment of the socia mode of heath have been infuentia in affecting change in recent years. With a focus on community settings rather than institution-based centres, CBR is one mode of providing rehabiitation, which is expored atter. There are a number of different modes of CBR that have been deveoped in response to oca needs and a number of other programmes of interventions which share some common goas, but have fundamenta differences. One such programme is that which is referred to as out-reach. These programmes are run by heath care workers e.g. physica therapists, at a oca eve to provide compex professiona care which directy addresses patients pathoogy, impairments, and / or disabiities (37,2). Such services are controed from an institution and there may be a mismatch between what the peope need and what the institution can provide (30). CBR is not the ony mode in which community participation is emphasised. The deveopment of the Independent Living (IL) movement, is another. Whie their origin is different, they both deveoped as a response to criticisms of the traditiona rehabiitation mode that was dependent on highy trained heath care professionas. The essentia difference between CBR and IL is that the CBR mode is one of partnership between the community and service providers, whereas contro is seen as essentiay being with disabed consumers in 41 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

14 Asia Pacific Disabiity Rehabiitation Journa the IL mode (25). In contrast to the IL movement, it is often heath care professionas who speak out in support of CBR and raise its profie, whereas in IL it is principay consumer driven (25). How we this is then transated through impementation, is another matter. Rehabiitation provision In 1995 O Tooe suggested that institution-based rehabiitation was heping no more than 2% of those in need (31). There is however an increasing shift away from deivering heath services managed from institutiona care faciities to primary heath services, centred on the needs of the oca community and deivered in the community. This is a focus in both deveoped and deveoping countries. Institutions are not redundant but are becoming increasingy focused on the provision of speciaist services. The way in which it is deveoping varies from country to country with the differing funding and infrastructure systems, as we as the different socia and cutura environments. A recent evauation of the impementation of the UN Standard Rues on the Equaisation of Opportunities for Persons with Disabiities (40) found that amost 30% of countries responding did not provide nationa rehabiitation programmes. It aso found that physica therapists and other aied heath professionas are rarey avaiabe at a oca or district eve, being predominanty avaiabe at the nationa eve. CBR workers were not reported as being present in deveoped countries. Physica therapists and other professiona heath care workers were seen as speciaists and often ony accessibe at nationa centres, which are impractica and costy to consut. The probems of providing programmes of treatment and rehabiitation, beyond one consutation, are further magnified. The survey (40) found that primary heath care has become the focus of deivering services to viages and poor urban areas. Forty-four countries reported providing community-based rehabiitation in these settings. However, estimates suggest that amost 50% of countries are ony providing rehabiitation for 20% or ess of the popuation. Where rehabiitation services are provided, they appear to focus on mobiity probems and ess so on other needs. Primary heath care and CBR were both reported as mechanisms by which rehabiitation is deivered. Whie there has been progress in invoving peope with disabiities through CBR or as teachers, instructors and counseors, they are ess ikey to be invoved in the design, organisation or evauation of rehabiitation programmes. 42 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

15 Asia Pacific Disabiity Rehabiitation Journa The survey (40) aso investigated the incusion of disabiity issues in the training curricuum of heath care professionas. Concern was expressed at the number of countries where this was not provided for doctors, nurses and primary heath care workers. On the contrary, physica therapy performs we in this area, with ony 7 countries reporting that it is not a component. However, this shoud sti be rectified. Whie the survey found that chidren are generay we provided for, the needs of aduts and the edery are not we catered for despite the significant risks of disabiity associated with age and socio-economic and poitica circumstances (40). Some rehabiitation services focus on a defined cient group, such as those with mutipe scerosis, often refecting financia backing from a Non Governmenta Organisation (NGO), or a particuar type of functiona imitation, such as visua, in isoated settings. What such programmes need to ensure, is that they provide for physica, sensory, menta, spiritua, emotiona and socia needs, taking a hoistic approach. Access to rehabiitation is often dependent on a medica physician s referra, who may ony be based at a nationa or provincia eve, thereby potentiay denying those in need of rehabiitation, who do not have access to a physician. It may aso be dependent on the extent to which that physician has been given rehabiitation-orientated training (37). Physica therapy provision The difficuties in reaising a primary care orientated vision are numerous. In terms of physica therapy, many deveoping countries have insufficient numbers of physica therapists to operate at a oca eve and they are mainy ocated in nationa or provincia centres and, to a esser extent, district services (3). For exampe, in deveoped countries the average physica therapist to popuation ratio is 1:1400 compared to an estimated average of 1:550,000 in deveoping countries (41). Assessing oca needs and resource anaysis There is no one mode of heath services deivery that wi suit a circumstances. What is required is a needs-based mode deveoped in response to oca circumstances. Some eary programmes of CBR were not successfu because they did not undertake any research on the sef-perceived needs of the target popuation, or the avaiabiity of oca resources (42,21). 43 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

16 Asia Pacific Disabiity Rehabiitation Journa Before determining what type of primary heath care or rehabiitation service is required, it is important to consider the foowing (37,21,41,3): Heath needs Ø Types of frequent disabiities eg movement, sight, earning, behavioura Ø Causes of those disabiities eg disease, injury, congenita Ø Differing eves of severity Ø Measures aready in pace to prevent those disabiities Cutura context Ø The situation of the disabed person and their famiy Ø Extent of participation: excusion from socia activities / participation Ø Factors infuencing participation / excusion both opportunities and barriers Ø Expectations of disabed peopes, carers and community priorities Ø Heath seeking behaviour / beiefs Heath service provision Ø Rehabiitation services aready in existence Ø Disabiity prevention and rehabiitation services needed, but not currenty provided Ø Government phiosophy and heath service pans poitica, economic and socia positions Ø Accessibiity of genera heath services eg screening, immunisation Ø Avaiabiity of existing oca resources It is important to identify and understand the current situation and map services; then to identify with a those concerned as to what gaps exist and what is required. Ony then can consideration by a reevant parties, be given to what heath service provision is most appropriate. This needs to take account of feasibiity, accessibiity and acceptabiity issues. None of this can be done without consideration of resource constraints, financia, faciities / equipment, education, transport, and manpower, incuding eve of skis and competency required to deiver what is necessary. 44 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

17 Asia Pacific Disabiity Rehabiitation Journa COMMUNITY-BASED REHABILITATION - ORGANISATION, DELIVERY AND EVALUATION Funding and accountabiity Both Governmenta and Non-Governmenta Organizations (NGOs) may fund or be in charge of CBR programmes. However, it is the responsibiity of the Ministry of Heath to provide prevention and medica rehabiitation services (3), with other reevant ministries contributing as appropriate. In addition, whie NGOs may fund CBR, states sti have a duty to ensure fu compiance with human rights aws both in the pubic and private sectors and to provide equitabe treatment for disabed peope (28). Most CBR services are provided by NGOs, which are based in urban areas, with itte dispersa to rura areas (42). CBR has deveoped in response to the need for governments and other non-governmenta agencies to use their imited resources to provide better coverage. As such, the way in which CBR has deveoped, has in part been in response to the agendas of the donors, funders and poiticians, as we as the peope with disabiities and their carers and communities (43). Organisation CBR modes appear to be top-down or bottom-up. The former is an extension of the traditiona institution-ed mode of rehabiitation. Leadership and contro extends from the government or NGO, through professionay ed rehabiitation services seeking the participation of peope in the community, with the services pre-determined by the professions (25,34). The bottomup mode refects more the origins of CBR where services are panned, managed and provided by members of the oca community (25,21). This acknowedges that the oca communities have their own resources, skis, abiities and understanding of oca circumstances, which are significant strengths to be utiised. This can be seen to be more fexibe and responsive to oca needs, faciitating ownership and acceptance, thereby enabing change. Many CBR programmes have deveoped as a resut of professiona eadership, often through heath care personne working with NGOs, drawing together reevant expertise and financia backing. Given that CBR shoud be designed to meet oca needs there are many CBR modes that exist. 45 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

18 Asia Pacific Disabiity Rehabiitation Journa CBR personne It has been proposed that there are three eves of service personne required for CBR (35,44), who need to be overseen by a CBR manager to ensure coordination of services. These are: Leve one: grass roots workers deivering services in a community - CBR workers. Mid-eve: workers who organise and support eve one workers: Mid-eve rehabiitation workers (MLRW), therapy assistants or supervisors. Leve three: professionas who refer users to the community or to whom referras can be made from the community, such as physica therapists. This structure may be used by CBR projects, but not necessariy so. How programmes are structured and who is invoved may we be dependent on the individuas, agencies and organisations invoved in estabishing the programmes. Community heath or deveopment workers may be the main contact for rehabiitation services at a oca eve, dependent on which, ministry or organisation is responsibe (3). They may act as vounteers or be empoyed. Their training shoud be provided ocay and based on the needs of the project and oca peope (45). CBR workers are key in the impementation of CBR. They are usuay the main person in contact with the famiy. They are abe to: act as oca advocates on behaf of peope with disabiities and their famiies with the heath services personne. provide iaison and continuity of care in the community on behaf of professionas e.g. continued supervision of home programmes. act as directors of community initiatives to remove socia and physica barriers that affect excusion e.g. increased socia acceptance (37). provide a positive roe mode for service users if they themseves have a disabiity. Concern has been expressed at what vounteer CBR workers can achieve. What is it, that is reaistic to expect of them, without reward, recognition and status? What incentive exists for them to attain higher eve skis without rewards (15)? However, the non-disabed vounteer can be critica to the impementation of many CBR programmes. One exampe is 46 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

19 Asia Pacific Disabiity Rehabiitation Journa the use of women through the Indonesian Women s Famiy Wefare Movement (PKK), which has an infrastructure that incudes the nationa and viage eve. The success of this initiative buids on the phiosophy of mutua sef-hep, that is part of the traditiona cuture (25). Severa countries have resorted to paying vounteers an aowance and refer to them as CBR workers or teachers (as in Maaysia), discarding the term vounteers. However, the term CBR teachers has been mis-interpreted by some, incuding the pubic, to mean that CBR provides academic programmes for chidren with disabiities, particuary those with earning disabiities (46). Concerns aso exists where the training of CBR workers has focused purey on the concepts of CBR, motivating the community and communication, but not on deveoping rehabiitation skis (15). This highights a vaid area of contribution for physica therapists and other members of the heath care team, to provide comprehensive and incusive training and ongoing support and case management, incuding goa setting, defining interventions and evauation and monitoring for CBR workers. There appears to be ess consensus on the roe of mid eve workers (45). The extent to which they act as supervisors of CBR workers, project monitors or managers is variabe and therefore, they need training that is adaptabe to how they are going to work on individua projects. Professionas invoved at the third eve of service provision can incude, but are not imited to: doctors, nurses, physica therapists, occupationa therapists, counseors, support staff, orthotists / prosthetists, and technicians. As described earier, they are often found at the provincia or nationa eve, with few at community or district eve. They are often seen as resources to refer disabed peope and their famiies to, if the first two eves of workers need additiona advice or are unabe to meet the needs identified. This provides access to speciaist advice and supervision. Professionas invoved in CBR programmes need to be appropriatey educated, to work with disabed peope and communities in a way that may not have been refected in their professiona education (45). 47 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd

20 Asia Pacific Disabiity Rehabiitation Journa Muti-professiona and muti-sectora coaboration Muti-professiona, inter-agency and cross-sectora coaboration are essentia in deivering effective services responsive to the needs of oca popuations. There needs to be an integration of heath, education, socia care, abour and empoyment poicies at a nationa and oca government eve. In terms of muti-professiona coaboration it is aso necessary between genera heath service staff and rehabiitation staff (3). The impications for the roes of physica therapists, arising from any mode of heath service deivery, wi be dependent on the avaiabiity of other professions and support staff, as we as the extent of integrated inter-agency and cross-sectora working reationships. This incudes working reationships with Disabed Peope s Organisations. The avaiabiity, or not, of some professions in a given environment and setting coud have impications for the potentia merging of roes in order to maintain a cient-focused attention to needs (37). Coaboration is not simpy about recognised professiona groups but aso the cooperation between western and traditiona heath care workers. This concept was promoted eary on (13), but the extent to which it has become a reaity remains questionabe. Whie the roe of the traditiona heath care worker is seen to have many advantages in taking heath care to the oca community there is a risk in managing expectations of those who seek to provide a service based on the principes of deveoped heath care systems. The oca community may no onger accept the traditiona worker and see them as a ower form of provision and a refection of ack of commitment to improve heath care provision (14). Other facets of coaboration and cooperation are derived from the muti-sectora working required to meet the needs across a domains that impact on quaity of ife, not simpy heath (34). As stated the basic concept inherent in the muti-sectora approach to CBR is the decentraization of responsibiity and resources, both human and financia, to community-eve organizations. In this approach governmenta and non-governmenta institutiona and outreach services must support community initiatives and organizations. (34) 48 Vo. 16 No J.C. No D:\Jayaprakash\A P D R J\APDRJ_Vo.16-2.pmd