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National Observatory on the Condition of Persons with Disabilities

 

Programme of the National Observatory on Disability 2014-2016

Programme of the National Observatory on Disability 2014-2016


National Observatory’s three year program on the conditions of persons with Disability (OND): 2014-2016

 

(approved at the session held the 4th November 2014)

 

 

 

Premise

 

The basic documents and the activities performed in the first three years, represent for the OND a framework of key competences and challenging responsibilities which the essential cores in a nutshell concern:

 

  1. Monitoring of the Convention’s application UN (CRPD) for the rights of people with disability, therefore the capacity to return to the country and to the United Nations an outline of the “gap” in the social participation between the general population and the population with disability;

 

  1. The elaboration of policies for the promotion of rights concerning people with disability, monitoring of their implementation and, as far as possible, an effective contribution in their implementation;

 

  1. Technical and scientific support to the definition of guidelines, deepening of professional and cultural orientations, to fully understand the conditions of people with disability in line with the principles that inspire the CRPD.

 

The methodological document drawn up for the orientation of activities in the first three year period  of the OND indicates guidelines that are still valid and therefore it is considered that they will be reproduced without reviewing the original document. While it is considered appropriate a deepening and development of two essential questions:

 

  1. The consolidation of the OND organization as an essential precondition in order to act with efficacy and efficiency, and reach the specified purposes. The issue is crucial for an apparent disproportion between the specific resources destined for the OND and the complexity of the tasks presently entrusted;

 

  1. Planning of the first three years, as a condition to grant an active and planned participation,  with the largest possible number of subjects of the Observatory, in order to reach some common objectives, a common and transparent vision of the necessary operational “path”.

 

 

 

The keystones of the methodological document  reintroduced and extended for the three year program 2014-2016

 

Revision, integration and qualitative improvement of  the reporting

 

Besides drawing attention to principle issues, the methodological document highlighted the close synergy between monitoring policies, monitoring of the person’s conditions with disability and elaboration of an action plan. It concerns  of creating a synergetic circuit that it has also been graphically synthesized. (cfr. figure1)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The goal in creating this circuit has to be fully realized and it can be reintroduced along with other precise and articulated indications for its implementation. In this respect, it appears:

 

  1. To work on the quantitative indicators that represent people's condition with disability in the perspective of full extent of their rights. The methodological document concerning this fundamental point expresses in the following way: “The key question from the operational point of view, is what is understood for equality participation. The theme is of an extraordinary complexity and therefore it requires an empirical approach and a choice. In the International Debate and in the vision propounded by the United Nations also in other monitoring areas concerning rights and welfare of the populations, the question “which equality?” has been decisive, that in the Convention terms, means “equality in the participation?”. In line with the theory of the “capacities” developed by Amartya Sen. In a nutshell, it may be indicated that the inequality exploration should cover:

 

  1. operations, namely the distance, in the acquisition of specific functioning (laws, acquisitions, activities) between population with disabilities and the general population; they can be defined as outcomes and result indicators;

 

  1. The modalities of acquisition of the functioning, namely the processes where persons with disability can achieve the functioning (for example, obtaining a qualification through special or differentiated learning processes, is different from the normal educational system), these can be defined as process indicators;

 

  1. The level of liberty/capacity of obtaining specific functionings, namely how much possibility of choice, auto-determination, control of their lives is recognized to the ones with disability; these can be defined as independence indicators”.

 

 

  1. Rationalise the policies reporting system: of great significance is achieving the objective of moving towards a reporting system on the policies impact, that includes the commitments established under the  UN, with the requirements laid down by the law L 104/92: from this point of view the idea is that the  OND, will be a place of synthesis and definition of the modalities in order to represent to the national and international institutions  (and to the parliament in first instance), to the civil society and to the associations of people with disability

 

 an evolution frame work of the policies, including the regulations , and their impact on the life opportunities of people with disability. The possibility that also the reporting provided by L68/99 could be integrated, has to be object of specific deepening.

 

 

 

Working Groups

 

The other important indication  in the methodological notes is composed from the work per groups under the technical and operative direction of the Technical Scientific Committee (CTS) and of its technical secretariat.

 

Also this choice has to be confirmed, or rather strengthened. The scope for action of the OND is so wide that only a choral participation, and the valorization of specialised competences can render credible and authoritative its action. The group responsible, chosen among the CTS and the best members of the OND, must enable to identify a group of experts able to:

 

  1. Of ascertaining useful acquaintances, information and advices in order to keep the OND  updated and in line with the evolution of its different areas of interest;

 

  1. Allowing the OND members to work for the elaboration of thought, concerning the area of interest, as regards to policies and monitoring data;

 

  1. Of being an interlocutor of the institutions, if called to intervene in the policies implementation and application processes to express opinions and indications on specific issues.

 

There is still the conviction that, at the invitation, external subjects of the OND can participate. In general, there should be flexibility in the organization of the groups, even if in presence of a strong coordination from the CTS.

 

The proposal is of maintaining the group structures of the previous triennial, but with some additions: a) A reporting group (on policies and statistic) that reasons on optimizing the data availability and is of reference for the elaboration of data; b) An integration of the mandate of the working groups is the result of the following structure with a first indication of the responsibilities:

 

 

 

Table 1 OND Working Groups

 

Gr

oup

Co-ordination Function

Operational Instructions

 

 

 

 

1.

Recognition of the disability condition

Roberto Speziale (FISH and ANFFAS)

In close coordination with the

 

 

 

Ministry of Health concerning the specific features relative

 

and multidimensional evaluation aimed in supporting the access system and the personalized planning

Interinstitutional Agreement

 to the system reform of assessment and to the simplification of the existing one.

 

 

Barbara Trambusti (Conference

 

 

 

of the Regions and autonomous Provinces)

 

 

 

 

 

 

 

Pietro Malara (Ministry of

 

 

 

Health)

(priority area of specific operative commitment

 

 

 

 starting from

 

 

 

2014)

 

 

 

 

2.

Autonomy,

Vincenzo Falabella (FISH)

With the specific commitment: a) of a direct monitoring of the

 

indipendent life and

 

Project

 

empowerment of persons with

Interinstitutional Agreement

PRO.V.I.; b) in developing a line of action

 

 disability: the

Barbara Trambusti (Conference

 

 

 

 

 

 

Public policies,

of the Regions and

Organizational and innovative forms regarding the projects

 

social, sanitary and social-

autonomous Provinces)

 “after us” (and in

 

sanitary contrast to

Renata Sangiorgi (Conference

particular on the Foundations of

 

disability

of the Regions and autonomous

Participations and other organizational forms)

 

 

Provinces)

 

 

 

 

(priority area of operative commitment

 

 

 

starting from

 

 

 

2014)

 

 

 

3.  Right to Life and Health

Mario Alberto Battaglia (FISH and

 

 

 

AISM)

 

 

 

Interinstitutional Agreement

 

 

 

Stefania Borghi (Ministry of

 

 

 

Health)

 

 

 

 

 

4.

Training processes and

Donata Vivanti (FISH)

 

 

school inclusion

Roberta Caldin (University of

 

 

 

Bologna)

 

 

 

Interinstitutional Agreement

 

 

 

Raffaele Ciambrone (Ministry of

 

 

 

Education University and Research)

 

 

 

 

 

5.

Labour inclusion

Franco Bettoni (ANMIL and FAND)

With the specific contribution

 

and social protection

Sergio Ricci (UIL)

of the representatives of Confindustria and

 

 

 

R.E.T.E. Italia Companies

 

 

Interinstitutional Agreement

 

 

 

Stefania Laudisio (Ministry of

 

 

 

employment and welfare)

 

 

 

 

 

6.

Accessibility

Isabella Menichini (ANCI, Comune

(priority area of specific operational commitment

 

(mobility information,

di Milano)

 starting from

 

services) in the perspective

 

2014) with the specific contribution of the

 

of the Universal design

Interinstitutional Agreement

FISH – (Agency for a Digital Italy)

 

 

Corrado Loschiavo (Ministry of

 AGID

 

 

infrastructure and transport)

 

 

 

 

 

7.

International

Mina Lomuscio (Ministry of Foreign

 

 

Cooperation and International

Affairs)

 

 

projection

Roberta Caldin (University of

 

 

on disability policies

Bologna)

 

 

 

 

 

 

 

 

 

8.

Reporting and statistics

Carlo Francescutti (Coordinator

Extended to INPS, INAIL, Conference

 

 

CTS-OND)

State-Regions, Ministries

 

 

Saverio Gazzelloni (ISTAT)

 

 

 

 

 

         

 

 

It is asked to the groups and in particular to the subjects in charge of the coordination function to organize the work, having as a specific reference the following indications:

 

  • To reread the contents in the “Biennial Action Plan” in order to identify all of the intervention areas that can be accomplished with a constancy regulation and with unchanged costs.

 

 

  • Ascertainment of the working lines, projects, fields of intervention on which it can be useful giving a further technical contribution in order to support political and administrative action in the various requested and appropriate types: from a simple opinion to the active elaboration of documents and projects.

 

  • Identification of action lines that can be subject to a special and specific commitment, also a meaningful “investment” being potentially active, with impacts in a short term period.

 

  • Elaboration of ideas and proposals, also for a long term period, for an updating in itinere of the action plan

 

  • For all the ongoing activities updating and developing the “work plan” ensuring the detailed definition of actions, timings, and necessary resources.

 

 

 

The Observatory as a promoter of initiatives, creator of projects and research

 

The experience of the PRO.V.I. project has indicated a promising path to pursue in the following three years, it consists in: developing projects and collaborations with all the institutional subjects (public authorities, administrations, universities, ex.) and of the civil society bearer of cultural contents, technical competences and scientific knowledge; useful to support the OND’s actions and the processes in order to report the guidelines, reports, “reviews” and synthesis of literature, elaboration of quality standards, quality of services, ex. The goal would be to qualify the disability policies by supporting them with evidence, evaluations and efficacy measurements. It is about drawing up a priority/opportunity list, by comparing it with the available budget or if necessary creating a “fund raising”, to plan the necessary implementing measures. This is all directed by CTS. The preparatory and investigative part of this line of action can be the definition of a plan of auditions in the CTS, possibly enlarged to the OND, that will enable in a clear way to evaluate the interlocutor’s quality and the feasibility of a planning/co-planning  task.

 

The topics concerning the three year program will be the following:

 

  • V.I. project, Guidelines for an independent life (in continuity with the previous triennial)

 

  • A definition plan of the quality standards, regarding residential services and daily cycle for disable (also in the framework of the UNI collaboration –Italian Unification Agency, to review the standard 11010);

 

  • Personalized planning and health budget;
  • Persons with disability that grow old: guidelines for the services

 

  • “Farming for health”: social agriculture as an opportunity for social inclusion of people with disabilities

 

  • Intellectual disability and the psychiatric comorbity: suggestions for the organization of services and treatment.

 

  • Support management (regional model implementations and planning of an informative system and the use of the institute)

 

 

The institutional support to the elaboration and implementation of policy measures in favour to persons with disability

 

After having drafted the biennial action Plan, the main goal for OND in the valorisation of the role, will be giving a practical and substantial contribution to the implementation phases,  using the capacities and competences of its components, with a spirit of service and respect for the institutional prerogatives. In this regard two aspects are identified: a) A propositional reinterpretation towards the decision makers of all the proposals of the Biennial Action Plan approved from the Government that can be implemented without variations in costs. It is essential that OND’s task is accompanied by a proposal action from the Ministry of Labour and Social Policies towards the other interested Ministries, and the other institutional representations of central level; b) Support in the field of consultancy, elaboration, proposals on issues where reform commitments are taken. The opportunities and the requests have to be evacuate, trying to promote the OND as a place for confrontation and debate between the  broad technical components, scientific and institutional in the OND. The evaluation of the current contingency has identified some issues to which is considered giving immediate collaboration availability starting from 2014:

 

  1. Assessment of the disability condition for a reform project with particular attention to the practical actions for simplification and reducing bureaucracy of the actual certification processes (civil invalidity, ascertaining of the handicap and on the evaluation of  L 68/99);

 

  1. Overcoming of the institute interdiction and reinforcement of the institute of the support administrator;

 

  1. Reconsideration, assistance and re-launch of the policies for an “independent life”;

 

  1. Implementation for accessibility promotion;

 

 

 

Strengthening of the Observatory as network, a place of meeting, exchange, and promotion of policies

 

Accomplishing these goals, mentioned in the aforementioned paragraphs, imposes a thought in the way in which the OND, CTS and technical secretariat work. A qualitative shift is necessary: in order to grant an efficient effort; more continuity also with long distance work; a broader coordination of the diverse lines of work. For an organizational and technical plan it is necessary:

 

  1. rethink/remodel OND’s activity under the form of projects (identification of the goals clear for everyone, monitored and with the evaluation of the available resources), and supporting it with the proper tools of the “project management” and of the cooperative work. The planning structure for the activity should be defined on an annual basis and appropriate technology support should be adopted (project management software);

 

  1. rethink the OND secretariat as a project management tool, identify a project manager in the OND intended as a guardian of the timings and of the goals of the coordination activity of the CTS;

 

 

  1. create an environment of communication and information technology that supports at distance the work of the thematic groups, of the CTS and of the OND as a whole (workgroup and document management);

 

 

 

 

A regime view

 

If the OND wants to comply with its commitments and accomplish the tasks conferred, it has to be thought as a “strong” structure although its organisational “lightness”: strong for the relations that will be established; for the authority that it will express, and for its way to understand the problems and seize the opportunities. In other countries similar activities are supported by specific organizations, that have  huge economic resources. It is about imagining for the OND a “network” strategy, that with low costs aims to enhance through agreements and working arrangements, the Italian network of subjects that often nowadays in a separated and autonomous way deals disability with competence and commitment. The OND has on its side the great symbolic value of the CRPD which is called on to monitor, the breadth of its composition, the strength of the institutions and associations of persons with disability that support it, the capacity of establishing relations and to propose itself as an interlocutor, that doesn’t aim in accumulating tasks and functions but rather tends to enhance the most significant resources of our Country. In this way the task will be possible and exciting .

 

 

 

OND’s 2014-2016 Work Program

 

The OND and all of its bodies have a programming of the meetings and of the common work. Usually each year from September to July:

 

  1. The CTS meetings are held each month, through face to face meetings or by electronic means;

 

  1. The OND meetings are quarterly meetings and are matched to the CTS meetings;

 

  1. The working groups prefer a distance working modality and it is suggested that these meetings are collocated shortly before the CTS and OND meetings.

 

 

 

 

In terms of a chronological and summarizing  representation, the OND’s program is articulated on 5 macro objectives thus defined:

 

Ob 1. Consolidating OND’s role as an institutional interlocutor for the policies implementation, by contributing to the implementation actions  of the 2 year plan through group participation to planning groups , of normative and documentary elaboration, implementation, policies monitoring;

 

Ob 2. Full implementation of the monetary system and reporting on the condition of people with disability and on the  policies implementation in order to meet the commitments with the United Nations, the associations of persons with disability and the National institutions, facilitating the action of the responsible technical bodies (Isfol and Istat in particular);

 

 

Ob 3. Promoting the development and the synthesis of acquaintances, of guidelines, of methodological tools in order to support the policies for the promotion of rights for people with disability;

 

Ob 4. Promoting a cultural vision of the persons condition with disability in accordance with the ones  of the ONU Convention, facilitating the promotion of citizenship rights and non discrimination of persons with disability

 

Ob 5. Consolidating the organizational structure and the OND’s capacity for action in order to strengthen the role and the importance at an operational, technical and scientific level.

 

 

First detailed articulation of the three year plan

 

Outlined below the triennial macro objectives accompanied by the actions to be taken. The articulation of the program for2015 and 2016 will be further detailed and developed each year in the month of January subsequently to the evaluation of the results obtained in the period of November-December 2014 and after the activity carried out during 2015 in order to render transparent and concrete the planning representation of the results achieved.

 

Year 2014: overview of the objectives into actions

 

Ob 1

 

  1. Create operative conditions for the OND to be a supporting location for the implementation of the actions of the biennial plan: 1. Analysis of the proposals of the Biennial Action  Plan that can be employed with the Ministries and the Institutions at a central level; 2.Individuation of the groups of experts and initiation of the supporting activity to the elaboration and development of the policies with a particular  reference to the macro subjects of the assessment to the disability condition; “empowerment” and legal protection of persons with disability; independent life  and accessibility

 

  1. Articulate a presentation project of the Biennial Plan to the regional and local administrations

 

Ob 2

 

  1. updating the state of the art and the timings of the future reports for the United Nations and for the government;
  2. updating on the International initiatives of the CRPD’s promotion CRPD and planning of the participation to projects or events on an international scale.

 

  1. creating the operative collaboration conditions between OND and the bodies in charge of the reporting and to national statistical surveys (Isfol and Istat in first place);

 

  1. defining the system of indicators for monitoring and reporting of the Convention and of the condition of people with disability (with Istat);

 

  1. launch the working group on the statistics related to the condition of people with intellectual disability and mental health problems (Istat)

 

  1. evaluation and orientation of the investigations on policies provided by law 104/92 and law 68/99

 

Ob 3

 

  1. Support and collaboration to the draft revision of the UNI regulation on the quality standards of the residential and semi-residential services for people with disability

 

  1. Support and supervision of the PRO.V.I project

 

  1. Individuation of the new technical and scientific projects, of the partnerships and of the auditions to realize in the 2015-2016 biennium.

 

 

 

Ob 4

 

  1. Support to the organization of events for the Day of Persons with Disabilities 3/12

 

  1. Criteria and indications of an operative proposal for the promotion on the means of informing the activities of promotion, for the right to non discrimination to persons with disability, in line with the

CPRD

 

Ob 5

 

  1. Constitution of the OND’s thematic groups and identification of the responsible subjects

 

  1. Launching of the thematic groups activity and discussion of the program and of the work objectives

 

  1. Definition of the “project management” roles and reconsideration of the technical secretariat function

 

  1. Individuation and activation of the software platform of “project management” and of cooperative work (and/or document management)

 

  1. Individuation of the project manager and of the OND’s overall activities

 

Year 2015: overview of the objectives into actions

 

Ob 1

 

  1. Consolidation from planning to the implementation phase of the proposals of the Biennial Action Plan: 1. Evidence of the implementation of a first list of proposals in the action plan and consolidation of the inter-ministerial activities for the policies implementation; 2. Finalization of the elaboration work concerning most relevant issues launched in 2014

 

Ob 2

 

  1. Continuation of the updating of the state of the art and timings of the future reports for the United Nations and the Government;
  2. Continuation of the updating concerning the CDRP International initiatives of promotion and planning to projects and/or events of international significance;

 

  1. Create the operative conditions of collaboration between the OND and the entities responsible to the reporting and to the national statistical surveys (Isfol and Istat in first place);

 

  1. Publication of a system of indicators for reporting and monitoring of the Convention and of the conditions of persons with disability (with Istat);

 

  1. Planning concerning the use of the INPS database, for a  qualitative/quantitative extension of the available information concerning people with disability;

 

  1. Feasibility study of the statistical surveys concerning the condition of persons with intellectual disabilities and mental health problems (Istat)

 

  1. Monitoring of the investigations on policies provided by law 104/92 and law 68/99 and implementation of a proposal of an overall review concerning the policies reporting system with eventual indications for an amendment of the regulation.

 

 

Ob 3

 

  1. Completion of the revision concerning UNI’s regulation on the standard qualities of the residential and semi-residential services for persons with disability.

 

  1. Completion of the PRO.V.I project.

 

  1. Realization of the technical scientific projects of the partnerships and of the hearings, as approved for the year 2015

 

Ob 4

 

  1. Support for the organization of events for the Day of Persons with Disability 3/12

 

  1. Criteria and indications for an operative proposal for the promotion on the means of informing of the activities of promotion, for the right to non discrimination to persons with disability, in line with the CPRD

 

Ob 5

 

  1. Continuation of the activities of the working groups and consolidation of their operativeness

 

  1. Usage of the “project management” and “work group” platform

 

  1. Systematic update and verification of use of OND’s web resources

 

Year 2016: overview of the objectives into action

 

Ob 1

 

  1. Continuation and eventual enlargement of the activities of implementation planning of the Biennial Plan Proposals in strict compliance with the goals accomplished in 2015

 

 

Ob 2

 

  1. Continuation of the updating of the state of the art and timings of the future reports for the United Nations and the Government;

 

 

  1. Continuation of the updating concerning the CDRP International initiatives of promotion and planning to projects and/or events of international significance
  2. Create the operative conditions of collaboration between the OND and the entities responsible to reporting and to the national statistical surveys (Isfol and Istat in first place);

 

  1. Updating of the reporting data and monitoring of the Convention and the conditions of persons with disability (with Istat);

 

  1. Integration in the reporting system and indicators of the INPS data;

 

  1. Eventual realization of pilot studies on persons condition with intellectual disabilities and mental health problems (Istat)

 

  1. Approval of the regulatory changes concerning the reporting of policies with disabilities.

 

Ob 3

 

  1. Realization of technical scientific projects, partnerships and hearings as approved in 2016

 

Ob 4

 

  1. Support to the organization events for the Day of Persons with Disability 3/12

 

  1. Definition of an operative proposal for the spreading of informative tools, of the activities of promotion concerning the citizenship and non discrimination of people with disability in line with CPRD

 

Ob 5

 

  1. Continuation of the activities of the working groups and consolidation of their operativeness
  2. Improvement and usage of the “project management” and “work group” platform
  3. Systematic update and verification of use of OND’s web resources
  4. Elaboration of an operative and organizational proposal concerning OND’s future, starting from the developed experience and from the representation of the goals reached in the two year period 2014-2016