- Email: [email protected]
Network-modalities (and needs) in rehabilitation: Perspectives for a continuous development
Rehabilitación (Madr). 2013;47(1):44---48
www.elsevier.es/rh
SPECIAL ARTICLE
Network-modalities (and needs) in rehabilitation: Perspectives for a continuous development A. Giustini San Pancrazio Rehabilitation Hospital, Arco, Trento, SantoStefano Group, Italy Received 13 January 2013; accepted 31 January 2013 Available online 16 March 2013
KEYWORDS Timeliness; Continuity; Outcomes
PALABRAS CLAVE Oportunidad; Continuidad; Desenlaces
Abstract Many WHO documents in recent years, mainly ICF and recently WRD, have described how Rehabilitation, and its scientific developments, are focused on Disabled People Rights to help any Country to create an ‘‘inclusive’’ Community. This awareness is really important in this period, mainly in Europe, when Health Services are changing for many reasons. PRM role and responsibility are to show how can be realised a wide and global rehabilitation system involving and renovating many aspects of health and social services in a synergistic way to reach the best outcomes for people, in the suitable way, reducing expenses and wastes. Offering different cares timely, in a real continuity and coherence, involving and guiding many different professionals, maintaining the centre on the Person (possibilities, prognosis, free wishes, family and context), evaluating evidences and results on the functional outcomes. In this general strategy the Italian National Plan for Rehabilitation is an attempt to connect different responsibilities, facilities, interventions for PRM doctors, in different times and places, modifying deeply the ‘‘traditional’’ relationship between Health Services and Rehabilitation. © 2013 Elsevier España, S.L. and SERMEF. All rights reserved.
Redes-modalidades (y necesidades) en rehabilitación: perspectivas para un progreso continuo Resumen En los últimos a˜ nos, en numerosos documentos de la OMS, en su mayor parte los de la International Classification of Functioning, Disability and Health (ICF), y, recientemente, el informe mundial sobre discapacidad (World Report on Disability [WRD]), han descrito cómo la rehabilitación, y sus desarrollos científicos, prestan atención a los derechos de las personas discapacitadas para ayudar a cualquier país a crear una comunidad «inclusiva». En este período, esta concienciación es importante, sobre todo en Europa, donde los Servicios Sanitarios están cambiando por numerosas razones. El papel y la responsabilidad de la especialidad de Medicina Física y Rehabilitación (MFR) son demostrar cómo puede hacerse realidad un sistema amplio y global de rehabilitación (el Modelo Integrador del Funcionamiento y la Discapacidad), en el que participen y se renueven
E-mail address: [email protected] 0048-7120/$ – see front matter © 2013 Elsevier España, S.L. and SERMEF. All rights reserved. http://dx.doi.org/10.1016/j.rh.2013.02.001
Network-modalities (and needs) in rehabilitation: Perspectives for a continuous development
45
de manera sinérgica numerosos aspectos de los servicios sanitarios y sociales para obtener los mejores resultados para los individuos, del modo más apropiado, con una reducción de los gastos y una evitación del derroche de recursos. El objetivo es ofrecer oportunamente los diferentes cuidados en una continuidad y coherencia reales, en los que participen numerosos profesionales diferentes que guíen al paciente y mantengan el centro de atención en la «Persona» (posibilidades, pronóstico, deseos de autonomía, familia y contexto), evaluando las evidencias y los resultados en función de los desenlaces funcionales. En esta estrategia general, el Plan Nacional italiano de Rehabilitación es una tentativa de conectar las diferentes responsabilidades, servicios, e intervenciones de los especialistas en MFR, en distintos momentos y lugares, modificando en profundidad la «tradicional» relación entre los Servicios Sanitarios y la Rehabilitación. © 2013 Elsevier España, S.L. y SERMEF. Todos los derechos reservados.
Introduction Ethical and social world scenario The objective of Rehabilitation is to empower people with disabilities to maximise their physical and mental abilities to have access to regular services and opportunities and become active and contributing members of their communities and their societies. It includes people with different disabilities from all types of impairments, including difficulty hearing, speaking, moving, learning or behaviour, and also all age groups: children, youth, adults and older people. The better explication of these concepts is contained in the recent ICF from WHO.1,2 Thus, Rehabilitation is closely dependent on the medical sciences and on the human rights of people with disabilities through changes within the Community.3 Our aims and our responsibility are to merge these two aspects and to realise concrete developments for both and at the same time Human Rights and Scientific interventions. The International Bill of Human Rights includes many Acts (Universal Declaration of Human Rights, International Convention on Economic, Social and Cultural Rights, International Convention on Civil and Political Rights, Convention on Rights of the Child, Convention on the Elimination of All Forms of Discrimination Against Women, and World Programme of Action Concerning Disabled Persons) and forms the basis for the United Nations Standard Rules on the Equalisation of Opportunities for People with Disabilities, which states: ‘‘The principle of equal rights implies that the needs of each and every individual are of equal importance, that those needs must be made the basis for the planning of societies, and that all resources must be employed in such a way as to ensure that every individual has equal opportunity for participation.’’4,5 Hence it is a strategy to address human development towards the creation of ‘‘Inclusive Community’’. During the past two decades, in almost all countries, Disabled People’s Organisations (DPOs) and organisations of parents with disabled have been established and strengthened. In the same period, in relation also to these evolutions in social and cultural fields, there have also been significant changes in the concepts of disability and rehabilitation. The limited participation in education, work and social activities experienced by disabled people is no longer
viewed as a result of their impairments, but primarily as a result of societal barriers to their participation, and a result of a lack of rehabilitation interventions. Many of these changes are the direct result of the increased activity and influence of people with disabilities, who now have central roles in monitoring the implementation of internationally accepted guidelines such as the U.N. Standard Rules on Equalisation of Opportunities for Persons with Disabilities. Now it is regarded as essential that programmes related to disability issues are planned and implemented with disabled people and their representatives. DPOs have the right and the responsibility to identify the needs of all people with disabilities, to make their needs known, and to promote appropriate measures to address the needs. In 2005 the World Health Assembly adopted a Resolution on ‘‘Disability, including Prevention, Management and Rehabilitation’’ (World Health Assembly Resolution 58.23). After this the General UN Assembly have approved (13 December 2007) a World Convention with almost the same principles. More recently World Report on Disability (June 9th 2011 the WHO---WRD) was launched at the United Nations headquarters in New York. The WRD displays what has come to be known as the integrative model of functioning and disability as expressed in the International Classification of Functioning, Disability and Health (ICF).6 This Report underlines all the evidences in Rehabilitation, social, health, educational, work and cultural fields in any Community and Country. In this presentation the representation of the role of medical rehabilitation in the implementation everywhere for these indications is strongly underlined; in particular, it highlights different and many implications, perspectives and opportunities for Physical and Rehabilitation Medicine. WRD acknowledges the genuine role of PRM and its contribution to enhancing a person’s functioning and participation in life. Challenges lie in the delivery of rehabilitation services in underserved parts of the world, ranging from the provision of timely, cost efficient and effective treatment, and the involvement of people with disability, family and care givers in the decision making process. In the present paper it is concluded that these challenges and the implementation of the WRD’s recommendations call upon multiple actors including National PRM Societies, Associations of
46 ‘‘Allied’’ professionals, Associations of Disabled People to be able to work together not only in Health Services but also in the whole Society.7 The World Report on Disability assembles the best available scientific information on disability to improve the lives of people with disabilities and facilitate implementation of the Convention of Rights for Persons with Disabilities. Following all these concepts and changes, and in deep and coherent relation to our clinical and professional development in recent years all over the World, an Evidence Base for Health Practice and Public Policy is now the main point in the State-of-the-Science on medical Rehabilitation and the efficacy and effectiveness of applications and implementations. For our development the goal is to define and support an evidence base for rehabilitation care, including issues related to measurement and research design, access to rehabilitation services, organisation of rehabilitation services, individual and community outcomes, but side by side also financial sustainability for private and/or for public payers. We must try to show it to stakeholders who are involved in policy decisions regarding these international fundamental Documents, to stimulate policy discussions, and to provide an evidence base also for rational policymaking. Probably, and I believe that, this is also an Ethical role for us.
PRM tasks and tools Rehabilitation really involves the use of all means aimed at reducing the impact of disabling pathologies and health conditions in a global approach to solve the person’s problems in order to achieve optimal social integration. Within any health context, rehabilitation specifically is defined as ‘‘a process of active change by which a person who has become disabled acquires the knowledge and skills needed for optimal physical, psychological and social function’’. Rehabilitation includes integrated social and sanitary interventions (evaluations of issues, possibilities and perspectives for person and context, in a Team form to maintain continuity, integration and synergy, following the Individual Rehabilitation Plan up to the better outcomes), many different structures, agencies and settings: so it is necessary to have a real Network. PRM is an independent medical specialty concerned with the promotion of physical and cognitive functioning, activities (including behaviour), participation and modifying personal and environmental factors. So it is responsible for the prevention, diagnosis, treatment and rehabilitation management of people with disabling medical conditions and co-morbidity across all ages.8 PRM Doctors have (as unique among Medical Specialists) the holistic approach to people (disabled or at risk being in disabling conditions) really necessary to this Networkmanagement. They also work within the concept that the access to the full range of rehabilitation services is a fundamental human right and that the patients within PRM services have complete autonomy in directing the aims of their rehabilitation programme through informed consent and choice. The overall aim of rehabilitation is to lead life avoiding any restriction for disabled people in relation to its personal context. In practice this task needs a combination of
A. Giustini measures to overcome or to work around their clinical situations and to remove or reduce the barriers to participation in the person’s chosen environments. The fundamental outcomes of rehabilitation are the person’s well-being and also their social and vocational participation. The PRM specialists have a crucial responsibility to the active engagement and the learning process that the patient must go through: the principles of adaptation and plasticity are necessary as (and together) the clinical (surgical, pharmacological, technological, physical, psychotherapeutic) interventions. PRM specialists are able to use these principles, which help to design strategies to enhance outcomes and avoid mal-adaptation (motor learning and recovery, inducing skillacquisition relevant to the patient daily’s life, preventing a learned non-use phenomenon to restore function, improving activity and enabling participation). Rehabilitation is a continuous and coordinated process, which starts with a change of ones’ conditions of Functioning, Health and Participation (the onset of an illness or injury or their consequences), proceeds by a Teams Networking of many professionals and settings, closely together with organised goal-oriented, patient centred manner and goes through to the individual empowerment. PRM specialists use specific diagnostic assessment tools, taking into account the individual’s personal, cultural, vocational and environmental context. PRM specialists are the leaders of the teams involving any needed professional and are responsible for their patients’ care in specialised PRM facilities. He is responsible for developing an individualised rehabilitation plan for each patient through a specific assessment and through the assessments of parents and care-givers. Only in this way, rehabilitation is able to enhance patient functioning and participation by providing a coordinated source of information, advice and treatment for the person with disabilities and the family, with the team acting as provider and catalyst. The most important part of the work must be a thorough understanding of the natural history of acute and chronic disabling disease, of the consequences of impairments and their impact on functioning (activity and participation), in close relation to the natural history of life, wishes and actual possibilities of the person and of the context. The Rehabilitation Prognosis is to have a clear view on issues of personal activities of daily living, care, return to work, studying, feelings, driving, etc. PRM specialists work in various facilities from acute care units to community settings. Unitary is the methodology (to guarantee the flow of information, patients and the audits also on scientific aims towards Evidence) and is based on the use of specific diagnostic assessment tools and the homogeneous carry out treatments including pharmacological, physical, technical, educational and vocational interventions. Physiatrist’s competence (and in the same time the check list of the activities in this flow)4,5,9 are: • medical assessment in determining the underlying diagnosis, • assessment of functional capacity and the ability to change,
Network-modalities (and needs) in rehabilitation: Perspectives for a continuous development • assessment of activity and participation as well as contextual factors, • devising a rehabilitation plan, • knowledge, experience and application of medical and physical treatments, • evaluation and measurement of outcome, • prevention and management of complications, • prognostication of disease/condition and rehabilitation outcomes, • knowledge and experience of using of rehabilitation technologies to assist at impairment, activity and participation levels, • team dynamics and leadership skills, • teaching skills, • knowledge of the social system, • knowledge of legislation on disablement and of human rights of people with disabilities, • knowledge of how to get help for people with acquired and congenital disabilities due to illness or trauma. In all these aspects the cognitive, psycho-relational, learning, motor, attention, awareness patients matters are fundamental, even if the illness is not directly connected with the nervous system. And on the other hand, the involvement of activities and functioning based on nervous system (the ‘‘structure’’ as ICF says) is necessary to evaluate the conditions and the prognosis of the person, to carry out the interventions, to support the active engagement and the adaptation of the person and of the context. As the person is an individual, equally the Rehabilitation Plan must be Individual and equally the Rehabilitation Network too must be unitary to offer adequate and coherent services: different settings from acute to community, different services and agencies from health to social, cultural and financial, many professionals and different competencies, different times in the natural history of illness, various and integrate support for functioning and participation.4,5
Criticism and perspectives In fact our actual situation could be defined and summarised by these terms: - On the one hand: In a few years the improvement of research (for example in neuro-biology, in technology, in pharmacology), the improvement in education of professionals applied, the improvement in accessibility, efficacy and effectiveness for interventions and services in Rehabilitation for very many Health condition (following any illness, traumas or other) are enormous. This could be defined as ‘‘medical rehabilitation’’. - On the other hand: In the same rank the improvement of the ‘‘Market’’ demand of Rehabilitation is enormous and quick due to: (A) Medicine power to save (in emergency and in chronic conditions) every sick person (also the serious one including as Comas, Cancer, etc.) and (B) The deep and quick change on social and individual attitude towards disability and impairment in relation to personal autonomy. In fact Quality of Life is now one of the main standards to define wish and hope for everybody, everywhere and in all ages, sex and economical conditions.
47
Rehabilitation is going to be one of the most important, diffuse and active part in the Health Service in any Country: many interventions, facilities and services (Hospitals, Centres for in patients and outpatients), many times (intensive cares, prolonged for chronics and for severe disabled), many professionals together with PRM Doctors, many educational needs. The scenario caused by the plaiting of these two ‘‘hands’’ is the continuous rising of rehabilitation activities, and also a continuous rising of costs and financial needs for Communities and Governments.10 Exactly the moment of maximum improvement of medical rehabilitation must be also the moment of greatest integration and involvement for many other community aspects and activities, not sanitary at all but necessary for this ‘‘Vision of Rehabilitation’’. To avoid the risk for us to loose integration with the numerous tools that we have to involve in the recovering process from surroundings, family, study, occupational, subjective, individual, relational, vocational, emotional, psychological matters, we need to find and define a specific net-working model able to coordinate and guide all the different points (in competences, times, places, different goals, different references and education, different relations to the Community and to the government and stakeholders and so on). And for the Scientific evidences too we need to strongly maintain this ‘‘vision’’ because only by this way we can show how complex our activity is, and how paradigms, standards and goals could be defined for our activity (on which finances and controls can be assigned) carrying out Rehabilitation interventions and activities unifying evidence, efficacy, sustainability and accessibility for all Disabled People, in the best relation to individual wish and needs in community life. Our Research activities must be deeply involved towards the solution of this problem: we must be able to move funds, teams and interests focusing more than in the past on Functioning, Participation and Autonomy up to Home, in the common life with the family and in the Community: these must be recognised as true evidences for Rehabilitation (scientific and financial). Also, and more and more in every Country, strong and continuous reductions in healthcare reimbursement place constant demands on rehabilitation specialists to reduce the cost of care and at the same time to improve productivity. Service providers have responded by shortening the length of patient hospitalisation.5,11 Thus a healthcare delivery system that did not fully understand the best regimens for inpatient rehabilitation therapy is now increasingly promoting outpatient rehabilitation to a sicker population in which there is a more limited ability to prescribe and deliver therapy, monitor patient compliance, and assess outcomes. This changing environment creates a need for a continuum of care in these discontinuous settings (e.g., rehabilitation hospitals, skilled nursing facilities, outpatient clinics, health maintenance and well spaces, and the home). Physiatry is not a very old discipline but precisely for this reason it has vigorous roots. Its taproot --- which as always in Medicine is part science, part research, a craftsman-like experience in the field, much inspection of human relationships with people and critical reflection --- highlights the duality of the ‘‘Physical’’ component, meaning attention to the whole physical environmental context which interacts positively or negatively with the Person and his problems,
48 and the ‘‘Rehabilitative’’ component, meaning the finalised aim of every intervention. The two components of this duality combine ever better, strengthening each other in research and in clinical practice. Precisely in the current transformation of health care demands they are showing their maximum potential and their enormous intrinsic value. A traditional medical intervention concentrates on a disease process, and perhaps also takes into consideration the context, but only as a factor influencing the disease process. In contrast the clinical and research attitude of Physiatry never separates disease processes from the individual as a whole and his active and passive relations with his surrounding context; indeed the physiatric approach is based constantly on the awareness that the determining factor is precisely this relation and not the isolated biological conditions.5,12 In a traditional medical intervention the evaluations and prognosis are based on an analytic separation of the single bio-pathological factors followed by their rational integration into an overall sum; in contrast, a primarily rehabilitative view leads to considering the whole (functional, emotional, motivational and behavioural) as the prime mover focusing the parameters for determining the modality, limits and aims of the care only on this. Since health status is the result of a complex and large number of different factors, the therapeutic pathway to reach the maximum possible levels of recovery and maintenance must be equally complex, synergic and multifactorial, despite the fact that sometimes the single pathological conditions have a serious and chronically progressive course, or even a dismal prognosis. There were Physiatrists who highlighted this aspect, stating that while Medicine works against diseases and their consequences, Physical Medicine and Rehabilitation works for the ‘‘Functioning’’ of people notwithstanding diseases and their consequences. So it is evident how, and why, PRM doctors (all together in different roles) must be able to offer competences and guide for a real NetWork involving synergistic services, interventions and cares from acute to long term, coordinating all health activities, involving other Community Agencies (social, cultural, sport, education, associative, etc.); to defend health conditions for disabled people, and their possibility towards the better quality of life.To support a real empowerment of these individuals in their context (family,
A. Giustini labour, home, wishes, etc.) we have surely a great task: not so far from the old meaning of ‘‘DOCTOR’’ as history and ethic (mainly in Mediterranean), and after science hands over to this century.12,13
Conflict of interest The author declares no conflict of interest.
References 1. Stucki G, Ewert T, Cieza A. Value and application of the ICF in rehabilitation medicine. Disabil Rehabil. 2002;24:932---8. 2. World Health Organisation. International classification of functioning, disability and health: ICF. Geneva: WHO; 2001. 3. Wade DT. Community rehabilitation, or rehabilitation in the community? Disabil Rehabil. 2003;25:875---81. 4. White book on physical and rehabilitation medicine. European Academy of Rehabilitation Medicine, European Federation of Physical and Rehabilitation Medicine, European Union of Medical Specialists (Physical and Rehabilitation Medicine Section). Madrid: Universidad Complutense de Madrid; 1989. 5. White book on physical and rehabilitation medicine in Europe. Section of Physical and Rehabilitation Medicine Union Européenne des Médecins Spécialistes (UEMS); European Board of Physical and Rehabilitation Medicine; Académie Européenne de Médecine de Réadaptation; European Society for Physical and Rehabilitation Medicine. Eura Medicophys 2006;42:292---332. 6. World Health Organisation, World Bank. World report on disability. Geneva: WHO; 2011 http://www.who.int/health7. Giustini A, Von Groote PM, Christodoulou N, Michail X, Vanderstraeten G. Disability and human rights: the WRD as unique opportunity. Eur J Phys Rehabil Med. 2012;48:179---88. 8. Giustini A. From acute intervention to domiciliary and social integration: research to build Community-Based Rehabilitation (CBR) on effectiveness. Int J Rehabil Res. 2004;27 Suppl. 1: 44---5. 9. Giustini A. Certainties and prospects in PRM. Eura Medicophys. 2005;41:215---9. 10. Franchignoni F, Ring H. Measuring change in rehabilitation medicine. Eura Medicophys. 2006;42:1---3. 11. Giustini A. The Italian research project for prospective payment of hospital rehabilitation care. Notes on a work in progress. Eura Medicophys. 2001;37:129---35. 12. A coherent policy for people with disabilities. Recommendation R (92) 6. Strasbourg: Council of Europe; 1992. 13. Rehabilitation and integration of people with disabilities: policy and integration. 7th ed. Strasbourg: Council of Europe Publishing; 2003. p. 369.
www.elsevier.es/rh
SPECIAL ARTICLE
Network-modalities (and needs) in rehabilitation: Perspectives for a continuous development A. Giustini San Pancrazio Rehabilitation Hospital, Arco, Trento, SantoStefano Group, Italy Received 13 January 2013; accepted 31 January 2013 Available online 16 March 2013
KEYWORDS Timeliness; Continuity; Outcomes
PALABRAS CLAVE Oportunidad; Continuidad; Desenlaces
Abstract Many WHO documents in recent years, mainly ICF and recently WRD, have described how Rehabilitation, and its scientific developments, are focused on Disabled People Rights to help any Country to create an ‘‘inclusive’’ Community. This awareness is really important in this period, mainly in Europe, when Health Services are changing for many reasons. PRM role and responsibility are to show how can be realised a wide and global rehabilitation system involving and renovating many aspects of health and social services in a synergistic way to reach the best outcomes for people, in the suitable way, reducing expenses and wastes. Offering different cares timely, in a real continuity and coherence, involving and guiding many different professionals, maintaining the centre on the Person (possibilities, prognosis, free wishes, family and context), evaluating evidences and results on the functional outcomes. In this general strategy the Italian National Plan for Rehabilitation is an attempt to connect different responsibilities, facilities, interventions for PRM doctors, in different times and places, modifying deeply the ‘‘traditional’’ relationship between Health Services and Rehabilitation. © 2013 Elsevier España, S.L. and SERMEF. All rights reserved.
Redes-modalidades (y necesidades) en rehabilitación: perspectivas para un progreso continuo Resumen En los últimos a˜ nos, en numerosos documentos de la OMS, en su mayor parte los de la International Classification of Functioning, Disability and Health (ICF), y, recientemente, el informe mundial sobre discapacidad (World Report on Disability [WRD]), han descrito cómo la rehabilitación, y sus desarrollos científicos, prestan atención a los derechos de las personas discapacitadas para ayudar a cualquier país a crear una comunidad «inclusiva». En este período, esta concienciación es importante, sobre todo en Europa, donde los Servicios Sanitarios están cambiando por numerosas razones. El papel y la responsabilidad de la especialidad de Medicina Física y Rehabilitación (MFR) son demostrar cómo puede hacerse realidad un sistema amplio y global de rehabilitación (el Modelo Integrador del Funcionamiento y la Discapacidad), en el que participen y se renueven
E-mail address: [email protected] 0048-7120/$ – see front matter © 2013 Elsevier España, S.L. and SERMEF. All rights reserved. http://dx.doi.org/10.1016/j.rh.2013.02.001
Network-modalities (and needs) in rehabilitation: Perspectives for a continuous development
45
de manera sinérgica numerosos aspectos de los servicios sanitarios y sociales para obtener los mejores resultados para los individuos, del modo más apropiado, con una reducción de los gastos y una evitación del derroche de recursos. El objetivo es ofrecer oportunamente los diferentes cuidados en una continuidad y coherencia reales, en los que participen numerosos profesionales diferentes que guíen al paciente y mantengan el centro de atención en la «Persona» (posibilidades, pronóstico, deseos de autonomía, familia y contexto), evaluando las evidencias y los resultados en función de los desenlaces funcionales. En esta estrategia general, el Plan Nacional italiano de Rehabilitación es una tentativa de conectar las diferentes responsabilidades, servicios, e intervenciones de los especialistas en MFR, en distintos momentos y lugares, modificando en profundidad la «tradicional» relación entre los Servicios Sanitarios y la Rehabilitación. © 2013 Elsevier España, S.L. y SERMEF. Todos los derechos reservados.
Introduction Ethical and social world scenario The objective of Rehabilitation is to empower people with disabilities to maximise their physical and mental abilities to have access to regular services and opportunities and become active and contributing members of their communities and their societies. It includes people with different disabilities from all types of impairments, including difficulty hearing, speaking, moving, learning or behaviour, and also all age groups: children, youth, adults and older people. The better explication of these concepts is contained in the recent ICF from WHO.1,2 Thus, Rehabilitation is closely dependent on the medical sciences and on the human rights of people with disabilities through changes within the Community.3 Our aims and our responsibility are to merge these two aspects and to realise concrete developments for both and at the same time Human Rights and Scientific interventions. The International Bill of Human Rights includes many Acts (Universal Declaration of Human Rights, International Convention on Economic, Social and Cultural Rights, International Convention on Civil and Political Rights, Convention on Rights of the Child, Convention on the Elimination of All Forms of Discrimination Against Women, and World Programme of Action Concerning Disabled Persons) and forms the basis for the United Nations Standard Rules on the Equalisation of Opportunities for People with Disabilities, which states: ‘‘The principle of equal rights implies that the needs of each and every individual are of equal importance, that those needs must be made the basis for the planning of societies, and that all resources must be employed in such a way as to ensure that every individual has equal opportunity for participation.’’4,5 Hence it is a strategy to address human development towards the creation of ‘‘Inclusive Community’’. During the past two decades, in almost all countries, Disabled People’s Organisations (DPOs) and organisations of parents with disabled have been established and strengthened. In the same period, in relation also to these evolutions in social and cultural fields, there have also been significant changes in the concepts of disability and rehabilitation. The limited participation in education, work and social activities experienced by disabled people is no longer
viewed as a result of their impairments, but primarily as a result of societal barriers to their participation, and a result of a lack of rehabilitation interventions. Many of these changes are the direct result of the increased activity and influence of people with disabilities, who now have central roles in monitoring the implementation of internationally accepted guidelines such as the U.N. Standard Rules on Equalisation of Opportunities for Persons with Disabilities. Now it is regarded as essential that programmes related to disability issues are planned and implemented with disabled people and their representatives. DPOs have the right and the responsibility to identify the needs of all people with disabilities, to make their needs known, and to promote appropriate measures to address the needs. In 2005 the World Health Assembly adopted a Resolution on ‘‘Disability, including Prevention, Management and Rehabilitation’’ (World Health Assembly Resolution 58.23). After this the General UN Assembly have approved (13 December 2007) a World Convention with almost the same principles. More recently World Report on Disability (June 9th 2011 the WHO---WRD) was launched at the United Nations headquarters in New York. The WRD displays what has come to be known as the integrative model of functioning and disability as expressed in the International Classification of Functioning, Disability and Health (ICF).6 This Report underlines all the evidences in Rehabilitation, social, health, educational, work and cultural fields in any Community and Country. In this presentation the representation of the role of medical rehabilitation in the implementation everywhere for these indications is strongly underlined; in particular, it highlights different and many implications, perspectives and opportunities for Physical and Rehabilitation Medicine. WRD acknowledges the genuine role of PRM and its contribution to enhancing a person’s functioning and participation in life. Challenges lie in the delivery of rehabilitation services in underserved parts of the world, ranging from the provision of timely, cost efficient and effective treatment, and the involvement of people with disability, family and care givers in the decision making process. In the present paper it is concluded that these challenges and the implementation of the WRD’s recommendations call upon multiple actors including National PRM Societies, Associations of
46 ‘‘Allied’’ professionals, Associations of Disabled People to be able to work together not only in Health Services but also in the whole Society.7 The World Report on Disability assembles the best available scientific information on disability to improve the lives of people with disabilities and facilitate implementation of the Convention of Rights for Persons with Disabilities. Following all these concepts and changes, and in deep and coherent relation to our clinical and professional development in recent years all over the World, an Evidence Base for Health Practice and Public Policy is now the main point in the State-of-the-Science on medical Rehabilitation and the efficacy and effectiveness of applications and implementations. For our development the goal is to define and support an evidence base for rehabilitation care, including issues related to measurement and research design, access to rehabilitation services, organisation of rehabilitation services, individual and community outcomes, but side by side also financial sustainability for private and/or for public payers. We must try to show it to stakeholders who are involved in policy decisions regarding these international fundamental Documents, to stimulate policy discussions, and to provide an evidence base also for rational policymaking. Probably, and I believe that, this is also an Ethical role for us.
PRM tasks and tools Rehabilitation really involves the use of all means aimed at reducing the impact of disabling pathologies and health conditions in a global approach to solve the person’s problems in order to achieve optimal social integration. Within any health context, rehabilitation specifically is defined as ‘‘a process of active change by which a person who has become disabled acquires the knowledge and skills needed for optimal physical, psychological and social function’’. Rehabilitation includes integrated social and sanitary interventions (evaluations of issues, possibilities and perspectives for person and context, in a Team form to maintain continuity, integration and synergy, following the Individual Rehabilitation Plan up to the better outcomes), many different structures, agencies and settings: so it is necessary to have a real Network. PRM is an independent medical specialty concerned with the promotion of physical and cognitive functioning, activities (including behaviour), participation and modifying personal and environmental factors. So it is responsible for the prevention, diagnosis, treatment and rehabilitation management of people with disabling medical conditions and co-morbidity across all ages.8 PRM Doctors have (as unique among Medical Specialists) the holistic approach to people (disabled or at risk being in disabling conditions) really necessary to this Networkmanagement. They also work within the concept that the access to the full range of rehabilitation services is a fundamental human right and that the patients within PRM services have complete autonomy in directing the aims of their rehabilitation programme through informed consent and choice. The overall aim of rehabilitation is to lead life avoiding any restriction for disabled people in relation to its personal context. In practice this task needs a combination of
A. Giustini measures to overcome or to work around their clinical situations and to remove or reduce the barriers to participation in the person’s chosen environments. The fundamental outcomes of rehabilitation are the person’s well-being and also their social and vocational participation. The PRM specialists have a crucial responsibility to the active engagement and the learning process that the patient must go through: the principles of adaptation and plasticity are necessary as (and together) the clinical (surgical, pharmacological, technological, physical, psychotherapeutic) interventions. PRM specialists are able to use these principles, which help to design strategies to enhance outcomes and avoid mal-adaptation (motor learning and recovery, inducing skillacquisition relevant to the patient daily’s life, preventing a learned non-use phenomenon to restore function, improving activity and enabling participation). Rehabilitation is a continuous and coordinated process, which starts with a change of ones’ conditions of Functioning, Health and Participation (the onset of an illness or injury or their consequences), proceeds by a Teams Networking of many professionals and settings, closely together with organised goal-oriented, patient centred manner and goes through to the individual empowerment. PRM specialists use specific diagnostic assessment tools, taking into account the individual’s personal, cultural, vocational and environmental context. PRM specialists are the leaders of the teams involving any needed professional and are responsible for their patients’ care in specialised PRM facilities. He is responsible for developing an individualised rehabilitation plan for each patient through a specific assessment and through the assessments of parents and care-givers. Only in this way, rehabilitation is able to enhance patient functioning and participation by providing a coordinated source of information, advice and treatment for the person with disabilities and the family, with the team acting as provider and catalyst. The most important part of the work must be a thorough understanding of the natural history of acute and chronic disabling disease, of the consequences of impairments and their impact on functioning (activity and participation), in close relation to the natural history of life, wishes and actual possibilities of the person and of the context. The Rehabilitation Prognosis is to have a clear view on issues of personal activities of daily living, care, return to work, studying, feelings, driving, etc. PRM specialists work in various facilities from acute care units to community settings. Unitary is the methodology (to guarantee the flow of information, patients and the audits also on scientific aims towards Evidence) and is based on the use of specific diagnostic assessment tools and the homogeneous carry out treatments including pharmacological, physical, technical, educational and vocational interventions. Physiatrist’s competence (and in the same time the check list of the activities in this flow)4,5,9 are: • medical assessment in determining the underlying diagnosis, • assessment of functional capacity and the ability to change,
Network-modalities (and needs) in rehabilitation: Perspectives for a continuous development • assessment of activity and participation as well as contextual factors, • devising a rehabilitation plan, • knowledge, experience and application of medical and physical treatments, • evaluation and measurement of outcome, • prevention and management of complications, • prognostication of disease/condition and rehabilitation outcomes, • knowledge and experience of using of rehabilitation technologies to assist at impairment, activity and participation levels, • team dynamics and leadership skills, • teaching skills, • knowledge of the social system, • knowledge of legislation on disablement and of human rights of people with disabilities, • knowledge of how to get help for people with acquired and congenital disabilities due to illness or trauma. In all these aspects the cognitive, psycho-relational, learning, motor, attention, awareness patients matters are fundamental, even if the illness is not directly connected with the nervous system. And on the other hand, the involvement of activities and functioning based on nervous system (the ‘‘structure’’ as ICF says) is necessary to evaluate the conditions and the prognosis of the person, to carry out the interventions, to support the active engagement and the adaptation of the person and of the context. As the person is an individual, equally the Rehabilitation Plan must be Individual and equally the Rehabilitation Network too must be unitary to offer adequate and coherent services: different settings from acute to community, different services and agencies from health to social, cultural and financial, many professionals and different competencies, different times in the natural history of illness, various and integrate support for functioning and participation.4,5
Criticism and perspectives In fact our actual situation could be defined and summarised by these terms: - On the one hand: In a few years the improvement of research (for example in neuro-biology, in technology, in pharmacology), the improvement in education of professionals applied, the improvement in accessibility, efficacy and effectiveness for interventions and services in Rehabilitation for very many Health condition (following any illness, traumas or other) are enormous. This could be defined as ‘‘medical rehabilitation’’. - On the other hand: In the same rank the improvement of the ‘‘Market’’ demand of Rehabilitation is enormous and quick due to: (A) Medicine power to save (in emergency and in chronic conditions) every sick person (also the serious one including as Comas, Cancer, etc.) and (B) The deep and quick change on social and individual attitude towards disability and impairment in relation to personal autonomy. In fact Quality of Life is now one of the main standards to define wish and hope for everybody, everywhere and in all ages, sex and economical conditions.
47
Rehabilitation is going to be one of the most important, diffuse and active part in the Health Service in any Country: many interventions, facilities and services (Hospitals, Centres for in patients and outpatients), many times (intensive cares, prolonged for chronics and for severe disabled), many professionals together with PRM Doctors, many educational needs. The scenario caused by the plaiting of these two ‘‘hands’’ is the continuous rising of rehabilitation activities, and also a continuous rising of costs and financial needs for Communities and Governments.10 Exactly the moment of maximum improvement of medical rehabilitation must be also the moment of greatest integration and involvement for many other community aspects and activities, not sanitary at all but necessary for this ‘‘Vision of Rehabilitation’’. To avoid the risk for us to loose integration with the numerous tools that we have to involve in the recovering process from surroundings, family, study, occupational, subjective, individual, relational, vocational, emotional, psychological matters, we need to find and define a specific net-working model able to coordinate and guide all the different points (in competences, times, places, different goals, different references and education, different relations to the Community and to the government and stakeholders and so on). And for the Scientific evidences too we need to strongly maintain this ‘‘vision’’ because only by this way we can show how complex our activity is, and how paradigms, standards and goals could be defined for our activity (on which finances and controls can be assigned) carrying out Rehabilitation interventions and activities unifying evidence, efficacy, sustainability and accessibility for all Disabled People, in the best relation to individual wish and needs in community life. Our Research activities must be deeply involved towards the solution of this problem: we must be able to move funds, teams and interests focusing more than in the past on Functioning, Participation and Autonomy up to Home, in the common life with the family and in the Community: these must be recognised as true evidences for Rehabilitation (scientific and financial). Also, and more and more in every Country, strong and continuous reductions in healthcare reimbursement place constant demands on rehabilitation specialists to reduce the cost of care and at the same time to improve productivity. Service providers have responded by shortening the length of patient hospitalisation.5,11 Thus a healthcare delivery system that did not fully understand the best regimens for inpatient rehabilitation therapy is now increasingly promoting outpatient rehabilitation to a sicker population in which there is a more limited ability to prescribe and deliver therapy, monitor patient compliance, and assess outcomes. This changing environment creates a need for a continuum of care in these discontinuous settings (e.g., rehabilitation hospitals, skilled nursing facilities, outpatient clinics, health maintenance and well spaces, and the home). Physiatry is not a very old discipline but precisely for this reason it has vigorous roots. Its taproot --- which as always in Medicine is part science, part research, a craftsman-like experience in the field, much inspection of human relationships with people and critical reflection --- highlights the duality of the ‘‘Physical’’ component, meaning attention to the whole physical environmental context which interacts positively or negatively with the Person and his problems,
48 and the ‘‘Rehabilitative’’ component, meaning the finalised aim of every intervention. The two components of this duality combine ever better, strengthening each other in research and in clinical practice. Precisely in the current transformation of health care demands they are showing their maximum potential and their enormous intrinsic value. A traditional medical intervention concentrates on a disease process, and perhaps also takes into consideration the context, but only as a factor influencing the disease process. In contrast the clinical and research attitude of Physiatry never separates disease processes from the individual as a whole and his active and passive relations with his surrounding context; indeed the physiatric approach is based constantly on the awareness that the determining factor is precisely this relation and not the isolated biological conditions.5,12 In a traditional medical intervention the evaluations and prognosis are based on an analytic separation of the single bio-pathological factors followed by their rational integration into an overall sum; in contrast, a primarily rehabilitative view leads to considering the whole (functional, emotional, motivational and behavioural) as the prime mover focusing the parameters for determining the modality, limits and aims of the care only on this. Since health status is the result of a complex and large number of different factors, the therapeutic pathway to reach the maximum possible levels of recovery and maintenance must be equally complex, synergic and multifactorial, despite the fact that sometimes the single pathological conditions have a serious and chronically progressive course, or even a dismal prognosis. There were Physiatrists who highlighted this aspect, stating that while Medicine works against diseases and their consequences, Physical Medicine and Rehabilitation works for the ‘‘Functioning’’ of people notwithstanding diseases and their consequences. So it is evident how, and why, PRM doctors (all together in different roles) must be able to offer competences and guide for a real NetWork involving synergistic services, interventions and cares from acute to long term, coordinating all health activities, involving other Community Agencies (social, cultural, sport, education, associative, etc.); to defend health conditions for disabled people, and their possibility towards the better quality of life.To support a real empowerment of these individuals in their context (family,
A. Giustini labour, home, wishes, etc.) we have surely a great task: not so far from the old meaning of ‘‘DOCTOR’’ as history and ethic (mainly in Mediterranean), and after science hands over to this century.12,13
Conflict of interest The author declares no conflict of interest.
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