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Paper

Disabled people: levels of care/citizenship and types of care

abstract

Background. The theme "levels of care or of citizenship for disabled people" and its relationship with evidence-based evaluation may seem to be a difficult question, and one that should be left to the experts. This, however, is a subject of interest to all citizens (Vecchiato T., 2003; Canali C. e altri, 2003). Speaking of "levels of social citizenship" means questioning the opportunities available locally, who these are available for, and if they are accessible. Disparities in accessing services - that is prioritising opportunities to those who need them the most - are a common problem, given that resources are limited and cannot be wasted. Resource management is another key question in defining the levels of help needed. If we truly care about people, we must be able to measure expenditure, what and how much we give, as well as valid and effective response indicators. In this perspective, "levels of citizenship" for disabled people means defining the indicators for effective social care, in order to guarantee these in each area.

Purpose. This research - carried out by the Fondazione Zancan and the Italian Federation for Overcoming Handicaps (Federazione italiana per il superamento dell'handicap) (Fish) in 2005 - aimed at analysing:

  • What has been done at a regional level with regard to the essential levels of assistance. By gathering and comparing the regional measures which provide norms with regard to disabilities and the essential care levels, we tried to map the current legislation analytically and to create a tool that could be regularly updated, in order to provide indicators on the development of the regional welfare system. The comparative analysis also included the costs involved and the data on help offered with regard to the most relevant services for disabled people. This was in order to evaluate the presence and consistency of services, as set by essential care levels, and their effectiveness, and to provide guidelines for short and long term programs. Indeed, this aspect of the research was difficult to achieve because of the lack of comparable data.
  • The ways disabled people are cared for overall, defining the qualifying elements and comparing them to local experiences, in order to identify and share citizenship pathways aimed at removing the difficulties (lack of response, problems with access, the inadequacy of the networks offering help) that cause inequality and isolation.

 

Method. This was both qualitative and quantitative research carried out in 3 Italian regions (Lombardy, Sardinia, Campania) with different welfare systems, geographical positions and socio-demographic characteristics, and therefore together they offer an overview of the situation in Italy. For this reason, this study is not based on a statistically significant sample.

Quantitative data from institutional sources were used (Istat, Ministry of Health) to analyse supply and expenditure; and 42 semi-structured interviews and 6 focus groups to analyse the experiences and the perceptions of the workers, disabled people and their families, of life, the care received and the most relevant changes within the family system, from diagnosis to after-care.

Finally, 20 legal measures applying to the 3 chosen regions were collected, and we investigated their content (aims, target population, interventions considered, etc.) as well as institutional integration, both managerial and professional.

Findings. The analysis of the administrative legislation highlighted how legal changes introduced by the legal framework 328 of 2000 and the decree 14.02.2001 regarding essential levels of help, were found to have been only partially instigated, with a prevalence of interventions, lacking unity and a complete strategic overview. Despite differences in traditions, culture and approaches to regulation, all 3 regions share, within regional legislation, a system of personalized programming (to deliver article 1 4of the Law 328/2000), even if they do not define the guidelines limited to integrated and global care, as set by the decree of 14.02.2001. An examination of the content of the legislation shows existing differences. To summarise, at the level of regional law the essential levels of help, which include care, and multidimensional assessment, ensuring the rights of citizens and the evaluation of interventions, appear to be far from being implemented.

Also with regard to an analysis of supply and demand for services for disabled people (allowing for the difficulties in finding comparable data) noticeable regional differences emerged. It was not possible to evaluate the effectiveness of interventions.

With regard to the care of disabled people and their families, as well as their relationship with services, the study indicates there was little joint planning on what disabled people need in their lives, to avoid separate interventions carried out by different people, subjects and services.

As regards personalized programming, even when found, this rarely defined and formulated an active role for disabled people and/or their families. The need for support can be felt at all stages (diagnosis, school integration, post-school placement and after-care. Services, however, still do not seem to be orientated to these functions. Where similarities are found, these are due to the efforts of individuals, rather than to the existence of working protocols which secure uniform treatments to all citizens within different services.

The absence or scarce use of protocols is found right through the processes, starting at the time the diagnosis, a time the diagnosis was communicated, a time felt both by workers and disabled people and their families, to be particularly critical. Research has stressed that the greater the delay and the poorer the management of the diagnosis, the greater the subsequent difficulties for disabled people and their familie.

Recommendations. This study has shown the need to implement the essential levels of care both in terms of process and in terms of agreeing common standards of references (for resources, service levels and indicators of effectiveness) in order not to increase the existing differences between the regional welfare systems. If we start working with the essential levels that need agreement - starting from a shared classifying system (Bezze et al., 2005) - in terms of both qualitative and quantitative standards of service supply, and care pathways for all citizens, but in particular those who are disabled -standards of care and the relationships between services, disabled people, families and associations will improve.

Key references

Bezze, M. et alii (2005). La classificazione dei servizi e degli interventi sociali. Studi Zancan 2.

Canali, C., Maluccio, A.N., Vecchiato, T., eds. (2003). La valutazione di efficacia nei servizi alle persone. Padova: Fondazione Zancan.

Vecchiato, T. (2003), Livelli essenziali di assistenza e servizi alle persone. Studi Zancan, 2.

Contacts: Ingrid Berto, Fondazione Emanuela Zancan onlus, Via Vescovado, 66 35141 Padova Italy, E-mail: ingridberto@fondazionezancan.it, Phone 0039 049 663800.

 

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