The first of the 5 articles that make up the United Nations Convention on the Rights of Persons with Disabilities (2006) articulates: "... to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity".
This Convention sets out an epochal change: from the paradigm of needs to the recognition of rights. It states, in its general principles, that disability is "part of human diversity and of humanity itself".
However, disability is still seen differently in many social contexts. Not only stereotypes, prejudices and outdated approaches continue to suggest their social representation, but also policies and intervention logics.
Consider the difficulty of terming people with disabilities. Some words used in the scientific field in the past (e.g. deficient, handicapped) have soon become the common language of stigmatization, if not of derogation. However, even recent expressions - such as "people with special needs" or "differently-abled" - are not correct, nor really inclusive, since they still identify disabled people as a category.
The term currently indicated by the WHO is "people with disabilities": people who are different in terms of temperament and history like all people, and also heterogeneous in their problems (physical, sensory, psychic ...). Disability is defined by the WHO, in the ICF,[1] the classification that describes and measures health and disability as: "a consequence or result of a complex relationship between the health condition of an individual and contextual factors (personal and environmental), that represent the circumstances in which the individual lives.”
There are over one billion people in the world with disabilities, that is, one in seven. And the number is destined to increase exponentially in the coming years due to the ageing population, as well as the increase in chronic diseases. People with disabilities have the same health needs as other people but have far greater chances of care inaccessibility, finding incompetent, non-facilitating health workers, and being treated badly in hospitals. One in two cannot afford health care, while many families often fall into poverty to provide the necessary care. About 70 million people need a wheelchair, but more than 80-85% of them do not have the availability. Many other aids for autonomy, like eyeglasses, hearing aids, etc. are not accessible to those in need of them.
We speak of complex disability when functional deficits are multiple and involve the organic, functional, cognitive and behavioural components of the person, for which the person needs high assistance. Genetic diseases or rare congenital diseases, other diseases that seriously involve the nervous system—independently of the pathogenic noxa—causing dependence in the activities of daily life, even respiratory, communication, and swallowing disorders, etc. are causes of complex disability. These conditions require long-term "acceptance" of services (=long term care).
The management of such situations can be defined as "designing the path of specific actions and assistance interventions aimed at the subject".
Is caring a health or a social ambit?
It is true that the health and social systems each have their own specific objectives. But, is it enough that they are connected only by organizational policies and protocols, albeit important ones? Could it be said that this is also one of those false dichotomies, as mentioned in a recent Lancet editorial: prevention or rehabilitation, training or action, primary or specialist care?[2]
We need an integrated thought! A highly integrated management is essential at all levels: institutional, administrative, and professional, so as to respond effectively (outcomes and costs) to the multiple needs of people with complex disabilities.[3] Even at the level of individual professionals. Working in synergy, in fact, requires adequate organization and specific skills but, it is above all, a matter of mentality and responsibility.
As the Enthoven model highlighted, informal carers: family members, friends, and caregivers are important in creating integration between the social and health systems.[4] Parishes, sports clubs, neighbours, shops, etc. could also be added. Already in 2002, the World Health Organization emphasized that due to the increase in chronic diseases caused by demographic changes and increasingly limited resources, health and social services alone are no longer able to read people's needs or respond to them.[5] It is necessary that the whole community becomes "competent" in some ways with respect to helping its members who are most in difficulty.
In keeping up with the WHO bio-psycho-social model and the disability paradigm based on human rights, the user or the individual with a disability who wants, with his dignity and life, to live should be the centre of integrated management. The quality of life is the focus on which to focus all interventions. Beyond the different definitions, the scientific community considers the quality of life a measurable multidimensional construct, with objective and subjective indicators. For at least 20 years, the psychologist Robert Schalock, former president of the AAIDD (American Association on Intellectual and Developmental Disabilities), author of multiple researches and studies on the quality of life, has shown that the improvement of the quality of life is to be considered a fundamental measure of effectiveness of rehabilitation programs and organizational models.
Changing the focus of attention - from the quality of care to the quality of life of the disabled person - causes a radical transformation in the care given. The objectives change from focusing on the service offered, therapies provided and process-orientation, to person-centred goals and long-term outcomes. The content of taking charge changes; it is no longer purely managerial but consisting of the supports that must be offered to the person to improve his life; including the interventions of the professionals or of the Authorities formally appointed to provide assistance and care.
Scientific culture today agrees on some fundamental points of good practice. Taking charge of a person with a complex disability must have an ecological approach that is, taking into account the environment in which he lives. Education or rehabilitation must promote the functioning of the subject, which is not an end in itself, but an aim towards development with a view to the quality of life, in order to increase the level of satisfaction of one’s life and a guarantee of social inclusion with adequate support. In fact, caring for a person with a complex disability means to work for her or his life project.
The moments of transition between the evolutionary phases of a person's life (schooling, adolescence, entry into the working world, emotional and sexual maturity, independence from the family, retirement, seniority, etc.), while seeking a new balance are all loaded with risks and opportunities. And this happens also for people with disabilities who need support that is more or less important but has the same existential needs for success and self-determination. One aspect to consider concerns the changes in the role and the reorganizations of the family, which necessarily accompany the changes linked to the growth of the person, so much so that we can speak of transitions of the person/family" system. It is therefore a common challenge for educational systems and health and social services, both in developmental age and in adulthood, to finalize their work in the present moment in building autonomies focused on the life cycle and jointly in pursuing a quality of life for the person with disabilities as well as for her or his family.
For years, many scholars have been pointing out that economic well-being is not always an indicator of better living conditions. In the approach of Amartya Sen, developed by Marta Nussbaum, the equality between human beings must be evaluated in terms of opportunities and choices, based on their reference values.[6] Ivan and Roy Brown remind disability operators that the degree of satisfaction of the expressed or implicit needs of a person is among the crucial quality of life indicators.[7]
In another model of quality of life (of the AAIDD) for neurodevelopmental disorders, 8 domains are evaluated: emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights empowerment. The last three are considered key predictors of quality of life, in particular, self-determination: the possibility of making choices is a central element in increasing the quality of life! People with very serious disabilities often do not even choose when or what to eat and at what speed (if they are fed). But it is essential to offer opportunities for experiences. Without knowing things other than the usual ones, in fact, no one can really choose.
Thus, it is a question of inclusive policies, of respect for rights, of empowerment, it means strengthening the awareness and promotion of one’s rights, either personally or through family members and organizations for people with disabilities. International conventions, good laws, and advocacy are not enough. No person can be considered immune from a disability since it can affect the existence of every person at any given time without predictability. Therefore, it is necessary that all citizens concretely defend these rights, with an everyday active effort to work for a society tailored to everyone. One can start by respecting reserved spaces, or having accessible places for them to do their own shopping or have entertainment … and many others, knowing that the attitude of one has a significant impact on others.
In fact, it is a basic need of every person to feel recognized, loved and respected; to be the protagonist of one’s own and common life, because "living without existing is the cruellest of exclusions".[8]
It is an interpersonal relationship that truly integrates and allows the realization of each one and the growth of the community in which one lives, especially when it is characterized by reciprocity.
Mariagrazia Arneodo - Centro di Riabilitazione Opera don Guanella - Roma
[1] WHO 2001. International Classification of Functioning, Disability and Health. trad. it. ICF, Trento, Erikson, 2002
[2] False dichotomies in global health: the need for integrative thinking. The Lancet, February 11, 2017
[3] Ervin DA et al. Healthcare for persons with intellectual and developmental disability in the community – Frontiers in Public Health 2014
[4] Enthoven AC. Integrated delivery system: the cure for fragmentation. Am J Manag Care Dec 2015
[5] WHO. Innovative Care for Chronic Conditions. Building blocks for Action. Global Report 2002
[6] Magni SF. L’etica delle capacità. La filosofia pratica di Sen e Nussbaum. Bologna, Il Mulino, 2006
[7] Brown I, Brown RI Quality of Life and Disability. An approach for Community practitioners Paperback – April 15, 2003
[8] Gardou C. La société inclusive, parlons-en. Il n’y a pas de vie minuscule. Eirès 2012
