FIMITIC

Simplification for a better administration

Vladimiro Kosic, President della Consulta Regionale dei Disabili

I must confess that, when I read the title of the conference for which I had to draft my paper, I was momentarily at a loss for words. “Europe: What are the laws in matter of disability?” Since I occupy a position at a regional level, I searched the web site of our region for some data on the matter. Although I circumscribed my research to the limits of law classification by matter and, more precisely, within the Staff field, I came up with the following results:

310.01 – planning and social welfare organization - documents found: 5

310.02 – welfare services - documents found: 83

310.03 – intervention for handicapped persons – documents found: 43

310.05 - voluntary service – documents found: 11

I did not do any research in the fields connected to public health service, education and professional training, work, transports, buildings and so on, because if I had tried to do some research, I would have certainly discovered the existence of so many special regulations for the disabled that, instead of drawing a 20 minute paper for this conference, I would have ended up having so much material at my disposal, that I could have drafted a programme of studies for an entire university course! In fact, there is an enormous amount of laws, many of which were passed both at a regional and national level. Yet, it isnÂ’t the case to question how much of what these laws foresee has actually been implemented. Nor is it the case to consider laws either unimportant or unnecessary. A legal and regulatory framework is the main guarantee citizens have to see their rights recognized.

Without regulations, rights might be confused with favours, principles with assumptions and needs with superfluous things. Therefore, besides being a sign of the evolution and progress of a civilization, laws show the direction in which communities go; they inspire the mind of our politicians and allow us to judge their work. As I have already said, we have enough “disability legislation”, both from the quantitative and qualitative point of view; therefore, both selection and simplification are necessary today, in order to avoid running the risk of clashes and to distinguish priorities from preferential rights. Otherwise, disability will continue to be considered a set of many pieces, as a sum of different and distinct sections, which are subdivided into categories that make distinctions between children and stepchildren, and which do not manage to build up a real system.

I believe that the effort we must make today is that of starting a “disability system” as a sum of various pieces, sections, categories and whatever else you have, in order to carry out a project, without which any answer is fragmentary and unsatisfactory. More precisely, the main course of development undertaken by the public administration for almost a decade, which is undergoing a simplification process of its relationship with citizens, applies to disability as well. This process can be implemented through two main guiding lines:

1.    The first guiding line, as above said, is substantially political and is related to the simplification of the regulations, and to the reduction of duties and bureaucratic formalities.

2.    The second guiding line is of a purely and typically organizational character and is also connected to service integration, so that citizens can turn to a single interlocutor with their various

needs, and this interlocutor will be able to solve their problems, help them, and start administrative

actions and processes in connection with various offices and services.

Substantially, the Public Administration should take upon itself the connection and circulation of information among its branches, so as to relieve citizens from the burdens of integration and prevent them from wandering about offices and trying to figure out administrative paper work and customs.

The most striking example of this kind of simplification is, perhaps, the booking at CUP[1][1] front offices. Today, in most of our region, when citizens need to book a specialist examination, they do not have to contact the hospital and health care centres, but they can simply go to a front office of their choice or phone a call-centre, which can offer them the wide range of services available in the territory. Besides the hundreds of front offices, the CUP provides citizens with a one-stop shop and a single phone number.

This is what we are trying to do in our region, by creating a one-stop shop for persons with disabilities. In short: it is a question of gathering and documenting the main needs citizens have to contact the public administration (health services and hospitals, local services and, if possible, public economic services – e.g. the INPS[2][2]) and of providing them with the opportunity of totally or partially meeting these needs by turning to a one-stop shop. In order to carry out this process and avoid misunderstandings, we must first establish the necessary prerequisites to work in the correct way, we must assign specific tasks to the people concerned and define the instruments which can grant reliable work. Hereinafter, I will try to do this by referring to some events I have recently been involved in.

The disability system, project sharing and instrument evaluation

The official opening event of the European Year of persons with disabilities took place in Bari from 14th to 16th February, in coincidence with the Second Conference on disability policies. As from C. Murray and J. Frenk’s comments to the WHO Report 2000, “discussions of health policy or health system reform often become ideological debates that are fuelled by anecdotes or, at best, by non-comparable results from studies in which differing methods were used”.[3][3] The conference in Bari confirmed that this applies even more to social policies.

I was present at a three day conference, where rhetoric and meetings played master, where comparison was surely disturbed both by the clash between national government and regions on the distribution of resources among the regions and by an unsuitable interpretation of the challenges that disabled persons[4][4] nowadays have to face. I mean that, on the one hand, it was not possible to agree with the coordinator of the regional social policy, that is, the member of the Regional Council A. De Poli, who severely criticized the national government because it was going to cut the social funds for the regions down by 50% (that is, from 771 million euros in 2002 to 350). On the other hand, I personally was of the same opinion as Senator G. Sestini, who insisted on the point that regions should publicly state how FSN[5][5] resources are employed. As from the above-mentioned Murray and Frenk comments, “the fundamental principles of the WHO Framework are: to clarify the boundaries of health systems; to assess how health and other systems interact to achieve key social goals; to define and measure health, responsiveness, and fairness in financial contribution; and, ultimately, to show the importance of transparency and accountability for the world’s health systems”.[6][6]

Every time I read this sentence, I think that nowadays in my region more than half of all regional funds are spent on health costs, without asking ourselves, on all sides, if the politicians’ answer: “more resources” to the citizens’ request for “more health” is adequate or, rather, if, to say it like Murray and Frenk, the health system could meet health needs. No, I do not think so. In my opinion, the reason is that today one of the most bristling themes of the social and health policy of our region, of our country and, in my opinion, also of all advanced societies is the definition of an intervention strategy apt to face the consequences of chronic diseases and of the general ageing process, which generate disabilities. We still fail to admit that the intervention strategy is only one, both from the sanitary and from the social point of view and that the new health system, which aims at creating four hospital beds out of 1000 citizens, is doomed to failure if it will not be understood and put into practice. But how? By acknowledging that today health is pursued and assured not only by the health system, but also by other systems (i.e. by education, and the social and employment systems), not only because, besides having a “defining goal”, “every system also has an effect on other shared social goals”[7][7], but also because, as I have already said, the “system” dealing with the matter of disability should first of all interact a great deal with the sanitary system, if we want to achieve the “key social goals” mentioned by Murray and Frenk. In my opinion, this system can become a concrete reality when the citizenship rights, in terms of services and security, are assured to everyone, in particular to disabled persons.

Afterwards, I happened to participate to the conference organised by the OECD[8][8] in Vienna on 6-7 March, whose title was “Transforming Disability into Ability” and which mainly dealt with the matter of the integration of disabled persons into the labour market. In the end, as usual, almost every subject was discussed. As stated in the above-said article by Murray and Frenk, “without comparable information about the achievements and organisation of different systems, transcendence of purely ideological debates will be difficult.”[9][9] This applies to health systems and this also happened at the Vienna conference which focussed on the theme “Transforming [dis]ability into ability”. Despite the authority of the institution involved, of the number and quality of the speakers (about 40 from all over the world), and of their experience in this field in their countries, after a two-day full immersion, I cannot say I witnessed a comparison between the active work policies adopted in different countries for disabled persons. What most of all disappointed me was what the representatives of disabled persons associations (EDF, Great Britain, Sweden) said against teleworking, because this would be a trap, into which disabled persons would fall and end up remaining isolated at home. The representatives of these associations stressed the customary public condemnations of discriminations and, in the end, they said that disabled persons will give up all hope, unless the entire system is revolutionized: therefore, this would mean that it is not necessary to waste time looking for special solutions. I find this really discouraging!

However, the Vienna conference gave me the opportunity to make some considerations. My first consideration is that the various public and private institutions, which provide disabled persons with services, are most of the time auto-referential; in other words, everything we do is fine, because, all in all, it will be done with good intentions and, anyway, it will always be better than doing nothing at all. The quality of the services provided is neither verified nor evaluated by anybody. In fact, there is neither a culture, nor a language, nor instruments available for a uniform scientific classification, common to all the persons involved in the sector of disability, which could allow for the implementation of these services. Everyone realizes that the numbers connected to disability, both in terms of the people involved and of the financial resources invested[10][10], would lead us to adopt an approach which takes into consideration the net benefit-investment ratio. It is unanimously agreed that good intentions, ranging from religion to ethics, are not sufficient to handle the problems of this sector because, though necessary, they are not sufficient to overcome the growing difficulties all of us are in. However, we do not know how to behave and so resources are more and more insufficient, squandering cannot be avoided, lobbies play master more or less everywhere and always where there is no control.

In my opinion, what should be remarked is that the disability sector requires more political attention and more specific professional competence, which are not assured neither to those in wheelchairs nor to those who occupy a certain position. According to me, what could at first assure the putting into action of this approach should be that the services provided and the persons who benefit from them share the following:

A project

Planning methods

Classification instruments for the needs of identification instruments for the checking and evaluation of the goals achieved, for which resources were spent.

Only a shared responsibility, together with the knowledge of the processes in progress, could allow for a correct performance evaluation and it is, therefore, fundamental that institutions involve associations representing disabled people during the analysis, planning, carrying out (as far as this is within oneÂ’s competence) and check phases.

I will try to present a “project” which could also be the main structure of the “disability system” I’m thinking of.

In short, the present challenges in the field of disability should be faced at a multi-dimensional level and, more schematically, by considering three different levels and assigning to each of these levels different responsibilities, tasks (legislation) and determinate specific resources.

1.    A general political responsibility, which should, on one hand, take into consideration the existence of disability” and the relevant numbers involved (persons and resources invested) and, on the other hand, acknowledge the fact that this problem does not involve only a minority, as all of us could happen to personally experience a disability situation. Therefore, architectural barriers, transports and services of general interest should be planned and everyone must pay for an insurance, not because they will surely have an accident, but rather in order to enable those who have one not to pay for the accident consequences by themselves.

2.    A special political responsibility, which should be responsible for the planning and coordination of the interacting systems involved in supplying the services necessary to assure disabled persons their rights. The systems whose interaction is fundamental are:

Health system

Education system

Active Work policy system

This could be considered a “disability system” and could find a place within the social policies sector. The structure and total staff would be involved in managing the integration of different systems and in defining the priorities and resources each system should invest on, in order to integrate the various systems (integration). Each interactive system should allocate financial resources in order to supply competent services (for instance the health system should supply sickness benefits, the education system specialized teachers, and the labour system the implementation of the actions necessary to promote the integration of disabled persons into the labour market). This issue requires further discussion and planning, because we must also keep in mind the disabled persons who will not go to school and/or work. The interaction with other systems, and especially with the health system, is also fundamental to the persons and families involved. Furthermore, it would be necessary to assure a government with effective regulations, which today do not exist.

3.    A homogeneous application of the classification instruments of disabilities and of the work methodologies used. The first point I would like to highlight is that we should start from drafting a personalized life project for each disabled person. The second important point is that in a situation where various systems interact, it is necessary to adopt a functional approach. The third point is that we must have at our disposal the most appropriate instruments for each specific interaction.

In short, the ICF[11][11] could, therefore, be used as a classification instrument for the drafting of a “personalized” life project for each disabled person. Subsequently, it would be advisable to adopt an appropriate classification instrument for each of the systems involved, so as to have a detailed analysis of the situation. For example, the ICF and the WHO-DASII[12][12] have already been adopted for the health system and, according to me, this could work well. The same thing should be done within the school system, where the concept of a functional diagnosis for the formulation of the educational project is a method which has been suggested for many years. This should also apply to the integration into the labour market, which now has at its disposal the instruments, such as the technical committee, necessary to foster the employment of disabled persons.

As I have already said at the Vienna conference, we should always try to have the political consent to carry out reformation projects, especially if they are connected to health and social issues, because the success or failure of each reformation project also depends on the involvement of the persons directly involved in it. This means that the associations of disabled persons should take part in the project, in the basic methods, in the classification instruments and in the assessment of the goals achieved.

I think that time for denunciation should give space to time for proposals and comparisons, in order to adequately face the present challenges of the “disability system”. Managing such a complex system, defining its rules and solving its still present contradictions will be possible only if those who need some help and those who provide for it will share their responsibilities. This is probably the most important challenge politicians have to face, without wasting any more time.

Well, where should we start from, if we want to confer a strong structure to the “disability system”? Associations and institutions, both in Bari and in Vienna, all agree on the point that it is necessary to adopt an instrument able to interpret disabilities from the functional point of view, because it is generally a common notion that the relevant issues are multi-dimensional. During the conferences of both Bari and of Vienna, the ICF was the matter under discussion. Maybe, this issue was debated too much, because I think we should bear in mind that this is a classification instrument. It is common knowledge that all instruments are useful only if properly used. However, having an instrument on which everyone agrees is not an unimportant thing, especially if we are going to start the innovative processes that I have tried to illustrate above and that would be implied in an appropriate use of the ICF.

Therefore, today we have an instrument, which allows us to orientate ourselves better within the confusing field of disability and to face the challenge of creating a “disability system” able to rearrange a legal and regulatory framework and to enhance the value of the resources available, not only in financial terms. In the end, in plain words, I would say that today disability requires not only more resources, but rather an investment in minds and motivation, which must aim at common goals.

During my 39 years spent pushing a wheel-chair, trying not to give up with my love for life, I learned that the coexistence with disability can be improved, on the condition that we do not devote bits of our spare time and our intelligence to the problems connected to disability. Suffering is, in fact, a serious problem and we can accept it only by giving to it a meaning, by minimizing its consequences and by not leaving alone the persons to whom chance granted less possibilities.