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Segretariato

Guidelines

THE PERSON WITH A MENTAL HANDICAP

Description of key words

 

Qualification

Operation through which new abilities are produced, taught or developed, which have never previously been achieved or present in the person's behaviourial repertory. Concerning people with intellectual and relational disability, qualification is an important process in approaching the general ability which can positively influence the quality of life of a person and his/her family.

Handicap assessment

"A handicapped person is one who has a physical, psychological or sensory handicap, which can be either stabilised or progressive, and the cause of learning, relational or work integration difficulties, and so determining a process of social disadvantage or alienation. The handicapped person has the right to resources established for them in relation to the nature and severity of the disability, the overall capacity of the individual and the effectiveness of rehabilitative therapies"(Art. 3 Clauses 1 and 2 Law: 5.02.1992 no.104).

Assessment of a handicap is performed by the same Medical Commission that assesses conditions of civil invalidity, combined with a social worker and an expert of the cases to be examined, in the local health authority (Art. 4 Law 5.02.1992 no.104).

Adaptation

Adaptation is defined by the correspondence between the competencies shown by a person and the requirements and expectations of different environments within which this person lives and operates. The adaptation environment is distinguished between: - Behaviourial adaptation: the extent to which the individual manages to follow social regulations and the behaviourial expectations that regulate the modes of acceptable conduct in various environments. - Social adaptation: the ability to initiate and maintain positive social relations, friendship and good affiliation relations with different people within his/her environment. - Personal adaptation: the ability and opportunity to effectively manage his/her own life with a maximum degree of independence.

Tax benefits

The complexity of the specific matter (disability) increases in relation to the complexity of the general matter (fiscal and tributary). For briefness sake, here we would like to only present the title fiscal benefits favouring the disabled and their families, while referring you to the studies and other links for more in-depth information.

Benefits are in favour of disabled people or in favour of their families provided the disabled person is fiscally dependent (annual income below 2840.51 euro).
Law 20.12.2000 no. 388 also extends these benefits to people with intellectual disabilities, with the condition of being entitled to companionship benefits.

Benefits for the family

Art. 33 of Law dated 5 February 1992 no.104 includes a series of benefits for disabled people and their families, where the disabled person holds a certificate confirming the severity of the disability (pursuant to Art. 3 Clause 3 of Law 104/92), and excluding independent working family members from these benefits. In short, an outline of the benefits is as follows:

Support administrator

The support administrator is a figure that protects those with intellectual and relational disabilities acknowledged by law in Art. 404 of the Civil Code. This figure is appointed by decree by the judge responsible for the protection of minors (Art. 405 C.C.) who has the task, among other things, of indicating the means by which support administration is called to operate in the interest of the beneficiary (e.g. spending limits). Support administrators can include parents, spouses and (new) bi-facto spouses, as well as people who are deemed suitable by the judge. It is also foreseen that legal representatives of the disabled can become their support administrators "as for the second Title of the first Book of the Civil Code". And not only the foundations and associations equipped with judicial value, but also those without this value, as are many voluntary associations. This was a constant request, founded on widespread procedures, which also saw the promotion of training courses for applicants to the volunteers and free training for support administrators.
(Law definitively approved by the Senate of the Republic on the 22 December 2003)

ANFFAS

Anffas was founded in Rome on the 28th of March 1958 as the "National association for the families of subnormal infants and adults" and was recognised as an authority with a status of legal entity following DPR n.1542 in 1964. In 1997 it became the "National association for the families of intellectually and relationally disabled" and identified as Onlus (Non profit organisation for social benefit) in February 2000. The history of Anffas founded its roots after the war, during the reconstruction period, in an Italy that had just started to rise again from world conflict: in Italy the need of the weakest categories did not gather interest other than among those who had a direct involvement with the matter . The most dramatic situation was perhaps that of families of the mentally disabled, surrounded by a climate of segregation and forbearance; they benefited from fragmentary initiatives of charity, but they were basically left alone, without support or opportunity.
Thousands of disabled people lived in institutes, while children were excluded from schools, something which was reserved for so-called "normal" people. Anffas Rome was founded in March 1958 under such conditions. It was the first Italian association for the mentally handicapped, and was established by about 10 people who were assembled by Maria Luisa Menegotta, the mother of a disable child. After almost half a century, Anffas today represents one of the largest associations for the protection of the disabled, with branches all over Italy.
RECENT HISTORY
In November 2000 the Association, still with a unitary structure, decided on a statuary modification and therefore became independent local Associations, making up the new base for National Anfass. This transformation was easily carried out with the newly integrated system of intervention and social services, outlined by the recent legislation on the matter and corresponding in an appropriate manner to the new model of State decentralisation.
THE AIMS
The main aims of Anffas are to protect the rights of intellectually or relationally disabled people and their families, the commitment to realising conditions of equal opportunity and non-discrimination as in the Italian Constitution, and are achieved by pursuing the following activities:

NUMBERS
Anffas today has more than 14,000 members divided among circa 180 local Associations spread over Italy; it supports 10,000 families and assists 8,000 disabled people, operating with 3,000 employees and 700 consultants, and it avails of the collaboration of young people who work with the civil service. The daily management of the centres involves at least 2,000 voluntary members each day. The local Associations avail of external volunteers for free time and sporting activities, assistance and companionship. Anffas is independently managed and collaborates with more than 60 managerial bodies (Cooperatives, Foundations). It finances its business by means of contracts with the National Health Service and thanks to private donations.

Monthly assistance cheque

This cheque was introduced by Law 30.03.1971 no.118 (Art.13); currently this subsidy is regulated by the modification to Legislative Decree 23.11.1988 no. 509 (Art. 9). People with a civil invalidity certificate within a percentage ranging from 74% to 99% invalidity can benefit from this cheque. Similar to the disability pension, the monthly cheque is granted to people between 18 and 65 years of age provided they have an annual income (valid for 2003) below 3,755.83 euro. The cheque is provided in 13 monthly instalments worth 223.90 euro per month. Lastly, the cheque is incompatible with other invalidity pensions granted by other public organisations, including subsidies from war, employment and services.

Barriers

Obstacles of limitations to the person independently functioning within his/her environment. These can be distinguished as architectural barriers for disabled people: for example, flights of steps, doors, lifts and what generally concerns access to public or private premises or environments; structural barriers : for example, steps onto public transport; technological barriers: for example, the complexity of using servomechanisms such as automatic ticketing machines; social barriers: for example, mistrust, rejection, prejudice which manifest in various forms concerning those who appear differently adept. These barriers overall represent the manifestation, from a cultural point of view, of a distance that divides disabled citizens - and how many people live with their condition - from different parts of society.

Balance of competencies

An overall assessment of a person in a specific functioning sector and which demonstrates competency, ability, deficiencies and limitations; generally indicated to assess employment capabilities. In the intervention in favour of disabled people, the balance of competencies represents an important moment of assessment for both the necessity to begin education or qualification aimed at performing specific capabilities, as well as the possibility to begin insertion programs into the world of work.

Life cycle

Significant periods during the life of a person which cause the person to have specific characteristics, for example adolescence, not in strict chronological terms, but more so the conditions of the life of a person (for example, living with your family or living independently).

Adaptable behaviour

This refers to the general conceptual, social and practical ability which was achieved through learning and which allows people to "function" (live satisfactorily with the expectations of their chosen environment) in everyday life. In accordance with most recent models, the limitations of adaptive behaviour compromises daily life and the ability to respond and confront current changes and environmental requirements. During the diagnoses and assessment of the disability, adaptive behaviour and its significant limitations can be measured using standardised tools.

Disruptive behaviour

This refers to the general set of adaptive behaviourial limitations, measurable using standardised tools, which compromise daily life and determine disability in the person's response to current changes and environmental requirements.

Contribution to expenses

The matter of contributions to social and social-health care service expenses (the latter, limited to the expenses for competency expenses for social spending) is mainly regulated by the Legislative Decree dated 31 March 1998 no.109 ( also known as the "richometre") and by successive decrees that have been integrated within it or have caused modifications to it. Decree no. 109/98, mainly allows a local authority to evaluate the economic situation of the nuclear family who request benefits/services of a social or social-health care nature, with the aim of determining the amount to be contributed to expenses. This evaluation (known as ISE= Economic Situation Indicator) is conducted by evaluating both the income due to assets (furnishings and property) using an appropriate equivalency scale that allows the evaluator to relate the ISE to the composition of the nuclear family (no. of members, minors present, disabled people, etc.) The end result (ISEE= Equivalent Economic Situation Indicator) is the information that the local authority use to calculate the amount of contribution to be given, in relation to criteria defined in the regulation (income group, logical progression, etc.).
Legislative Decree no.130 (from 2 May 2000) modified Legislative Decree 109/98 introducing, among other things, the principle for which possible contribution calculations to expenses for services involving people with severe disabilities - certificate pursuant to Art. 3 Clause 3 of the Law 5.02.1992 no.104 - must be carried out by evaluating, the economic situation of the disabled person and not that of his entire family.
This principle is rarely respected in reality due to the non-promulgation of one of the two decrees that should have followed Legislative Decree 130/2000:

Condition of severity

"Whatever the impairment, be it single or multiple, it reduces personal independence, in relation to age, in a manner that makes the individual require permanent assistance, which is constant or extensive in the individual's sphere or in that of reference, the situation assumes connotations of severity. The situations identified as severe are determined as priority in public service programs and operations." (Art. 3 Clause 3 Law 5.02.1992 no.104).
The wording of Law 104/92 assumes particular importance and has become an element on which attention has been concentrated not only by operators (doctors, rehabilitation therapists, instructors, etc.) but also with administrators (in relation to the choice of social policies and therefore the definition of the network of personal services available) and the associations (in relation to the role of social and environmental factors, and not only functional, that have effects on the quality of life of a disabled person).
The "2000-2003 Action Plan for Policies relating to Handicaps", the product of the 1st National Conference on Handicaps (Rome - December 1999) highlights four principles -guidelines on which the plan is based, and among them one relating to major severity (the action strategically aims, above all, to resolve needy situations that encumber people with severe disabilities and their families who assist them. Only by resolving these problems the possibility will arise to obtain inherent or similar solutions within the sphere of disability - taken from the introduction to the Action Plan).

The Italian Constitution

The matter of non-discrimination and equal opportunity - Art. 3

The matter of the right to employment - Art. 4
The matter of the right to health care - Art. 32
The matter of the right to education - Art. 34
The matter of the right to assistance - Art. 38

Cretinism

The term currently defines a congenital form of mental handicap with the delayed development of the skeleton due to an absence or insufficiency of thyroid gland secretions. The term was used negatively in the past and was stigmatised as a means of defining people with intellectual disabilities.

Guardianship

An attitude that characterised a certain period of history relative to society's answer to disability, consisting of the practice of isolating disabled people in institutions, generally found in locations that were positioned far from urban areas. The difference from today, the concept that supported this practice was that a disabled person could not live within normally social gatherings since they had to defend themselves from other people as well as themselves, and, as a consequence, were treated as passive subjects who were unable to take independent decisions relevant to their existence and were to therefore be guarded in buildings and areas that guaranteed them their isolation from what was then considered normal society.

Morosis

Term which emerged during the second half of 1800 to define the pathological condition of a person who is intellectually disabled, which existed from birth or from early childhood, in which psychological development was prohibited or prevented due to the superiority of organic components over social components. This term referred to a form of intellectual pathology which influenced its degree (imbecility) or extent (stupidity). More specifically, the term defined a condition of slight retardation of intellectual development so as to legally consider a person capable who was affected by it. The term is not currently considered appropriate because it is seen as a negative judgement of a disabled person, as well as stigmatising them.

Mental deficiency

Term used in the 1900s to define an intellectual handicap due to insufficient development or because of a delay in intellectual capacity caused during the prenatal (hereditary, congenital), perinatal or postnatal periods and of a heterogeneous nature. The term is no longer used because it is considered a negative judgement (moron) of a disabled person, as well as stigmatising them.

Deinstitutionalisation

The diffusion of concepts such as integration, normalisation(see) assumed, in a period that ranged from the end of the sixties throughout the seventies, the service of real "ideological" support of that entire vast movement that was know as anti-institutional" (according to the differently described environments "anti-institutional psychiatry", anti-institutional pedagogy"....). The ultimate purpose of this composite cultural reality was to restore "a way of life" and daily living conditions to the disabled which would be as close as possible to normal real life situations within society. In particular, the movement brought about the use and ethically of these awful residential institutions within the asylum, or above all, the entire purpose and management methods, on the contrary promoting alternative service methods of greater dimensions (community) capable of guaranteeing situations of independent life and treatments according to an "alternative, less restrictive" principle of personal freedom.

Dementia

One intends a serious compromise of the mental capability as a result of the death of a considerable number of nerve cells, and, as a result the person is no longer able to process the contents of tests in a useful manner to perform the activity in everyday life. It deals with a condition characterised by its development after 18 years of age, with multiple cognitive deficiencies, including a poor memory due to the physiopathological effects of a general medical condition, to the persistent effects of a substance or multiple ethiologies. Dementia is different from mental retardation since it is characterised by mental deterioration with a decline in intelligence after 18 years of age, compared to previously levels achieved by the individual.

Social deprivation

Phenomena which is often the consequence of a custodial attitude in which the person, lacking contact with stimuli and situations of social character, shows the effects of this in terms of evolution and development of adaptive capabilities. This phenomenon causes the person to lack experiencing roles, relations, functions, rights and responsibilities due to a lack of social content.

Functional diagnosis

Functional diagnosis has the purpose of supplying the operator with a contributive awareness of a disabled person's reality and it is the tool which permits the drafting of the Individual Educational Plan. The objectives of functional diagnosis are summarised as follows: 1) the detailed awareness of disabled people's actual situations, with particular reference to identifying levels of capability (competencies and abilities possessed), limits (competencies and ability deficiencies and the presence of psychological and relational behaviourial problems) and potentiality (competencies and abilities in a latent state that can be encouraged) of the person 2) definition of a pursuable intervention to overcome the limits or activation of potentiality 3) indication for the most appropriate application of intervention procedures and the necessary activities to pursue the objectives 4) definition of the indicators that allow constant monitoring of the person's progress, contributing to the final efficiency assessment of the Individual Education Plan.

DIN ( Disability Italian Network)

Disability Italian Network. Agency that deals with training in Italy for the implementation of the International Classification of Functioning, Disability and Health (ICF).

Subjective right

Subjective right (facultas agendi) indicates the ability attributed to a person's desire to act on satisfying their own interests (ability recognised and guaranteed by the objective right). The objective right (also called norma agendi) is the set of regulations set apart for conduct that discipline a community, a society, etc. An example in more precise terms is: the subjective right is the situation for which a disabled person who did not receive what the law foresees for them can appeal to the Ordinary Judge to achieve recognition of this right.

Disability

Disability is intended as a phenomenological expression of damage; the loss or reduction of functions or the specific capacity deriving from damage or impairment , that is, an abnormality dependent on a structure or function; distinguished from a handicap which is defined as follows: "social phenomena resulting from a psychophysical disability that expresses a discordance between the capacity of the individual and the expectations of the surrounding environment. The result of the confrontation between the person's disability and the environmental requirements of main ecosystems".

Disability(latest WHO definition)
WHO using the ICF tool (Classification of Functioning, Disability and Health) currently defines disability as "a health condition in an unfavourable environment". The definition surpasses the previous one (1980) through which the WHO suggested a general classification of impairment (deficiency) - disability (incapacity) and handicap (liability as a consequence of a deficiency-impairment that limits a person's adaptation to a normal role, in relation to age, sex and social-cultural factors).

Intellectual and/or relational disability

The loss or reduction of functions of specific capacity which manifests with defects or deficiencies in general intellectual functioning, within an environment of social abilities and interpersonal relations and in the overall level of adaptive behaviour.

Mental disorders

One intends a mental or physical condition primarily characterised by personality disorganisation, of mental functions and emotions capable of compromising biological, psychological and social functions of the individual in a compromising manner.

Development disorder

One intends a mental disorder usually identified during childhood, infancy or adolescence, or rather, the evolutive age group. It includes, according to current diagnostic manuals, a series of psychiatric syndromes that range from mental retardation to specific learning disorders, from motor and communication disorders to development disorders, such as autism, from behaviour disorders to eating disorders during the evolutive age and other syndromes.

DSM-IV TR

It deals with a multiaxial system for the classification and registration of mental disorders with a main principal of providing a useful, credible and shared guide to clinical practice, founded on an vast experimental base. This system allows, in agreement with the most recent version (DSM -IV TR), the identification of psychiatric diagnosis, on the basis of specific criteria, attributable to the conditions of each patient and the registration of various components in the clinical and functional framework according to a precise code. It is used by clinicians and researchers with different orientation and in different treatment environments that admit people with mental disorders and it represents a necessary tool to gather and communicate accurate statistics on public health. Substantial compatibility exists between the DSM -IV TR proposed by the American Psychiatric Association in 200 and another system of classification, the ICD 10, for mental disorders proposed by the World Health Organisation.

Ecosystems

Ecosystems refer to various living environments within which a disabled person is inserted, for example, health institutions, family, school, the working world, etc.; environments that carry their own specific rules and requirements for the disabled person to follow and which contribute to determining a degree of handicap, overall severity, adaptation and quality of life.

Education

It is a process of actions made available to lead a person through a course who has half of the development of an individual's potentiality in terms of knowledge, competencies and useful ability to confront the multiple aspects of daily life. Concerning people with intellectual and relational disabilities, the educational interventions - starting with a general assessment of individual capability, limitations and individual potentiality - thoroughly investing the person with mental, physical and intellectual dimensions with the purpose of allowing the development and maintenance of: individual autonomy to treat the person and their lifestyle, cognitive ability, relational competency to manage their social and sentimental lives, a sense of self-esteem and the construction of their own identity, social autonomy to make use of resources and opportunities, a working capability, orientation in daily life, social integration.

Empowerment

Empowerment, has a composite and ecological meaning in the sense that along with individual dimensions, such as the perception of being capable of asserting a certain control on oneself and on reality, while also referring to social-environmental resources such as socially supporting relations on which the person is dependent, as well as the possibility to obtain a job, from the active participation in community life and the various activities in which humans bring about the enhancement of their own "power". (S. Soresi)

Professional figures

General professional figures operating in the disability sector and who intervene at various levels to provide support - in relation to health, therapy, rehabilitation, education, training, assistance - for disabled people and their families during the processes taken on. The main operating professional figures in the disability sector are: rehabilitation doctors, psychiatrists, child neuropsychiatrists, neurologists, psychologists, pedagogues, professional instructors, support teachers, rehabilitation therapists, social animators, psychomotrists, speech therapists, social-health care and support operators.

Frenastenia

Term no longer used, originated in the 18th century, used to define a condition of mental retardation. Currently considered stigmatising since it attributes a hint of being judged as "a weakness of the brain", for people with intellectual disabilities.

Judge Supervising a Guardianship

Magistrate placed in each court; as well as competencies originally ascribed to them by the civil code on matters of protection and authority, they hold functions highlighted by special laws to absolve institutional tasks of the judicial body to respond to family needs. This person's main assignments involve: protection and guardianship; exercising parental authority; consultancy and controlling functions over the adoption of minors; authorisation of the issuing of a minor's passport; protecting the interests of a child on behalf of the divorced parent who is not entrusted with the child; authorising the voluntary abortion of a child by a minor without parental intervention; validation of legal action for compulsory health care intervention. Fifty years from the institution of this organic role and exclusive activity, the role remains non-existent, leading to the civil and penal magistrate taking on the ordinary functions.

Handicap

Term used within the previously mentioned WHO International Classification System (ICIDH 1980). The definition offered by the World Health Organisation is as follows: "in an environment of inherent health eventualities, a handicap is a disadvantageous condition and the consequence of an impairment or a disability which limits or inhibits some people taking a normal role in relation to age, sex, and social-cultural factors." From this definition, it appears clear that a handicap represents ...the socialisation of an impairment or a disability and its consequences - cultural, social, economic and environmental - ...the disadvantage arises from the decrease or loss of capacity to conform to expectations or standards within the universe which surrounds the individual". This term has currently been deleted from the new system of the WHO International Classification (IFC) and was replaced with the less stigmatising term "restriction to participate".

ICD-10

It is an international classification system for sicknesses and problems related to health proposed by the World Health Organisation and has reached its 10th edition (1992), which includes definitions and detailed descriptions, using symptoms and signs used to characterise diagnostic criteria, with over 300 mental and behaviourial syndromes and disorders mentioned. The clinical descriptions in fact explain the signs and symptoms of each syndrome or disorder and highlight the criteria for each appropriate diagnosis. Among the different versions proposed, in 1996, a specific guide for the diagnosis of mental retardation was issued which allows the complete coding of mental retardation clinical characteristics and functions according to 5 diagnostic axes, corresponding in sequence to the level of retardation and behaviourial problems, to associated medical conditions, to associated psychiatric disorders, to the overall assessment of the psychosocial disability and to connected abnormal psychosocial situations.

ICF

International Classification of Functioning. International Classification of Functioning, Disability and Health. The last tool processed by WHO to describe and measure the health and disability of the population. The ICF is used to classify the health conditions of all people even in relation to environmental factors. The Italian edition of the manual is edited by Erickson

Idiocy

Stigmatising term no longer used due to its representation of an approximation of human character to that of animals, introduced at the beginning of the 1800s to define the more or less absolute suppression of functions of comprehension and emotion, be they acquired or congenital. It referred to a condition of serious or profound mental retardation due to incomplete or abnormal development of intelligence.

Imbecility

Stigmatising term no longer used to define a form of intellectual pathology which influenced the level of intelligence. Used in the second half of the 1800s. It would have identified the condition of a person with mental retardation who showed a mental age of between 3 and 7 years of age and who required active supervision whilst carrying out personal care during everyday life.

Companionship benefits

Companionship benefits are part of the State's welfare economics, at different times, made available to recognised civil invalid citizens, following confirmations and certifications by the Medical Commission pursuant to Law 295/90. Companionship benefit was introduced by the Law 11 February 1980 no.18 and was issued to two categories of civil invalids:

Companionship benefit is provided independent of age. It is not related to a person's income and is granted to Italian citizens or foreign nationals in possession of a residence permit, while it is incompatible in cases where the disabled person is a patient in a centre at the total expense of the State. Incompatibility does not exist for a working man or woman or for those with a special license.

The amount is lodged monthly (12 instalments) in favour of the disabled person or their representatives. The amount for 2003 is set at 431.19 euro.

Attendance benefit

It was established by the Law 11 October 1990 no. 289, and it is granted to minors who are certified with:

The amount for attendance benefit for 2003 is fixed at 223.90 euro, is provided in 12 monthly instalments and is incompatible with companionship benefit.

Insertion in the workplace

Insertion into the working world for disabled people results as being a fundamental part of the complex process of social integration. It forms an important qualification and normalisation act, which in its forms as "apprenticeship work", "exchange work" or real employment, and is supported by a specific law (Law 68/99). For years now, work insertion projects are being carried out on a national level that place attention on the quality of the processes through the predisposition of specific, individual methods that accompany disabled people into the world of work: professional training, correct execution of tasks, appropriateness of relations established in the workplace.

Mental incompetence

Term was used to define a relatively severe intelligence deficiency caused by the insufficient development or retardation of intellectual capacity due to hereditary prenatal or congenital causes (gene disease or pathologic problems during pregnancy), perinatal (trauma during delivery) and postnatal (infectious disease during early childhood) of a heterogeneous nature, used to define a primitive intellectual weakness that would have led to an unsuccessful education corresponding to age and social position. The term is no longer used because it is considered as stigmatising, since it is easily linked to a negative judgement of inadequacy on the part of an intellectually disabled person.

Social integration/insertion

Disabled people, even though they are members of society like everyone else, often find themselves living in situations of isolation or alienation from the fabric of society where they live due to the large number of obstacles - physical, institutional, cultural and psychological - which limit their integration. Social integration of the disabled in Italy has passed between two extremes for many years: the difficulty of accepting the diversity of disabled people and the maximalist intervention of disorganised insertion at all costs. Today social integration of the disabled, basically an acquired concept for the majority of Italian society, represents a complex problem to confront, which requires huge efforts of sensitisation, as well as the availability of economic and human resources to remove current obstacles. To pursue social integration of disabled people means satisfying two base prerequisites without which it is difficult to see the integration process defined as:

• Physical integration: the disabled person participates within the normal physical environments (home, school, work, etc.). -
• Functional integration: the disabled person manages to use and control the normal physical environments (for example, managing to eat in a restaurant).
• Social integration: the disabled person has mutually gratifying social relations with family members, neighbours, schoolmates, colleagues, etc.
• Personal integration: the disabled person develops the need for meaningful personal interaction with other people. There is the possibility for him/her to have a satisfying private life: from children with parents, siblings, relations, friends; to adults with parents, friends, partners and children.
• Integration in society: the disabled person expresses himself/herself as a citizen with all his/her rights, through the various possibilities of self-determination in his/her present and future situation.
• Integration of "Services": the disabled person uses normal services and as little as possible, "special" services destined exclusively for him/her.

Scholastic integration:

The insertion of a disabled child within the schooling world - included in a specific set of rules which foresees the placement of a support teacher and the provision of a personalised education plan for each disabled student - since the end of the 70s it allowed the closure of "special schools". This created an important cultural passage to overcome the conception of an unequal disabled child who can develop learning and relations within a scholastic context. Nonetheless, the process of scholastic integration presents light and darkness in Italy, above all where the scholastic authorities and the teaching staff see the attendance of a disabled person as an additional pupil and not an integrative part of the class who cannot be separated from the others. Unfortunately these situations are common in which scholastic integration is that of moving a disabled student out of the classroom, into the so-called "integration workshop", lessening the concept of integration (from: integer "that cannot be divided" ) which, through the integration of the pupil with his unit of people, this forms the required situation to guarantee equal dignity, without distinctions or even worse, discrimination.

Interdiction and Disqualification (guardian-curator-judge supervising a guardianship)

INTERDICTION and DISQUALIFICATION are two judicial institutes which, by totally or partially limiting the judicial capability to act, have the function of protecting people who are unable to take care of their own interests.

With the judicial review of INTERDICTION, the person is placed in the judicial state of absolute incapacity to act.
A TUTOR is nominated for this person who is responsible for his/her care and who must also represent the disabled person in all civil actions, including the administration of an estate. The regulations governing the guardianship of minors applies here.
The purpose of guardianship is that of ensuring the ward has a better quality of life. With the verdict of DISQUALIFICATION, the disabled person has a limited capacity for ordinary actions, while he is assisted for extra-ordinary actions by a curator, where this disabled person is not represented in any way, but merely assisted at will.
The CURATOR is not given tasks concerning the care of the person.

Interdiction and disqualification are always revocable, in the event that the cause, which brought about the review in the first place, is lessoned.

Following the verdict of interdiction or disqualification, the JUDGE RESPONSIBLE FOR GUARDIANSHIPS grants the practical execution of protective methods.
The judge nominates a guardian, an under tutor and a curator.
The law foresees various control regulations on the actions of the guardian and the curator.

Protective interests

Art. 24 of the Constitution states that "everyone can act with good sense for the protection of their rights and protective interests". The basic difference in respect to the subjective right is, in hasty terms, the legitimacy of the citizen to request - for example - an offer or a service, unless the Ordinary Judge does not oblige the public authority to fully acknowledge the claim of the same citizen. Law 104/92 is one of the most obvious cases of conflict between the legitimacy of the disabled person who requires assistance (for example transport) and the availability of the resource in the Municipality.

Relief intervention for the family

Term introduced in the panorama of recent national and regional regulation in the assistance field responsible for "family centrality" during the process of caring for a disabled person. This role, intended as an active resource for the integration of services, can only be claimed if parents and other family members do not live with the severely disabled person, they can in turn rely on the opportunity to safeguard their psycho-physical well-being. This is one of the principles referred to in the purpose of Law 162/98 (maintenance measure in favour of severely disabled people) that allows Municipalities and private social authorities with proven experience to also plan relief intervention for families realised, for example, by means of temporary acceptance of disabled people into existing residential structures or summer centres. This possibility allows the family, and in particular the parents, who directly care for the severely disabled person to regain physical and mental energy e.g. by going on holiday or more generally having a "separation" period. It is also a further guarantee for these sudden necessities that can occur in families such as the need of hospital care or other happenings charged those who normally assist the disabled person.

Direct intervention

All rehabilitative, therapeutic, educational and training activities directly provided and practiced with and on disabled people, among them: psychological and educational intervention, physiotherapy, logopedia, psychometrics, operations, etc.

Indirect intervention

Indirect interventions are those technical interventions in favour of disabled people which are performed in the absence of the disabled person and that contribute to creating conditions that allow the person to carry out direct interventions: meetings and gatherings to determine and draft a project undertaken, networking among the involved institutions, support for families, etc.

Civil invalidity

Art. 2 of the law dated 30 March 1971 no.118, defines civil invalidity as citizens affected by congenital or acquired handicaps, also progressive ones, including mental irregularities due to oligophrenia of an organic or dysmetabolic nature, mental insufficiencies deriving from sensorial or functional deficiencies that have caused a reduction of working capacity not less that one third or, if under 18 years of age, those who have persistent difficulties performing tasks and functions typical for their age group. The purposes of social-health care assistance and the concession of companionship benefit, people considered civil invalids are those over sixty years of age who find themselves in situations of difficulty as foreseen for minors (Art. 6 of Legislative Decree dated 23 November 1988, no.509).

Invalids due to war, work or services are excluded, as well as the blind and deaf and dumb who are all covered in other laws.

The degree of invalidity is determined based on an appropriate table approved by the decree of the Minister for Health on the 5th of February 1992.

Art. 2 from the Law dated 30 March 1971 no. 118 was merged with the Legislative Decree dated 23 November 1988 no.509 which deals with different aspects relative to the definition and verification of civil invalidity, among them:

"congenital or acquired handicaps, of which article 2, second clause, of law dated 30 March 1971, no. 118, comprising of the permanent results of a physical and/or mental or sensory illness which causes permanent functional damage" (Art. 1 Clause 1)

"the determination of the percentage reduction of working capacity must be based on: a) the essential nature of the loss, be it anatomic or functional, total or partial, of organs or apparatus; b) on the possibility, or not of fitting a prosthetic device which guarantees the recovery of organs or injured apparatus in a total or partial manner; c) on the importance held in the workplace of the organ or apparatus, with the anatomic or functional damage"(Art.1 Clause 4)

The verification of civil invalidity is carried out by the Medical Commission as in Art. 1 of the Law dated 15 October 1990 no.295. These Commissions are established in every ASL (local heath board) and is made up of:

The Medical Commissions are in turn (bases on the disability to be assessed) integrated with a health official respectively representing the national association for maimed or civil invalids, the Italian union for the blind, the national body for the protection and assistance of the deaf and dumb and ANFFAS. Lastly, it is worth noting that during the health assessment, the person concerned can ask their own family doctor to attend.

ANFFAS and the associations representing disabled people and their families assess the current system of assessment not only obsolete, but, to begin with, harmful to the dignity of the person who is being assessed according to compensative logic of the damage, and not according to a logic respecting human, civil and social rights, that could, countering the current system, be the object of an assessment as per the definition of the Overall Take Charge Project.

Law 104/92

It is the first specific sector law that refers to disability and that imposes the economic-social reform of the Republic. Articles 1 and 2 state that duties allocated to the Republic (agreed upon in the new dictated definition of Constitutional Law no.3/2001 - see table 3) orientated to guaranteeing complete respect for human dignity, to the prevention and removal of invalidating conditions, to reaching the maximum personal autonomy possible, to realising civil, political and patrimonial rights, ensuring health care and social interventions, to overcome conditions of alienation and social exclusion of handicapped people. The specific indications of Law 104/92 refer to all the aspects of the life of disabled people and their families: assessment of a handicap, prevention and early diagnosis, treatment and rehabilitation, social insertion and integration, personal help services, treatment abroad, the right to education and training, working integration, architectural barriers, access to information and communication, collective and individual mobility and transport, concessions and criminal aspects. The law the deals with the delicate and complex issue of the division of institutional competencies among regions and provinces, relating to the definition and realisation of programs and interventions for disabled people and their families; this theme which should be reanalysed and reread in the light of the transformation process of the State from a federal point of view.

Essential levels of assistance (LEA)

The concept of "essential level of assistance" in legislation regulations central to themes of health protection, was introduced with the Legislative Decree dated 19 June 1999 no. 229 which modifies and integrates the previous Legislative Decree dated 30 December 1992 no.502. It is however with the DPCM dated 29.11.2001 that the state defines essential health care and social-health care assistance, which become, for the citizen, the condition of the right to be exercised against public administration. The DPCM dated 29.11.2001, in reality, takes in the agreement reached between the Regions and the State (agreed upon on the 22.11.2001) which includes monitoring actions and revisions of lists, in the Monitoring Table. The 15th of April 2003 saw the approval of the 2nd report on the state of the works of the Monitoring Table and verified by LEA at the State-Regions Conference.
The LEA Decree contains lists in which services financed by the National Health System are indicated, the indications on offers and services in the social-health care service (attachment 1/C), the total/partial services excluded by LEA (attachment 2/A and 2/B), the services included in LEA that present a potentially inappropriate organisational profile (attachment 2/C), particular indications on the levels of on the matter of hospital assistance, specialised assistance and social-health care integration (attachment 3) and lastly, guidelines relating to the role of the Regions on LEA matters (attachment 4).

Mental Illness

One intends a mental or physical condition primarily characterised by personality disorganisation, of mental functions and emotions capable of compromising biological, psychological and social functions of the individual in a compromising manner.

Mania

Psychopathic condition characterised by excessive euphoria, disinhibition, boundless self-esteem and self-confidence, extreme tendency to undertake ventures and escape towards ideas that change the biographic context of the person and where the person is uncritical of themselves. Historically, in the 1700s mania represented, along with idiotism or amenza, one of the damages to the capability of judgement without fever or coma. It currently represents a diagnostic criterion within mood disorders.

Melancholy

Psychopathic condition characterised by deep depression, physical laments and frequent hallucinations and raving. Historically, in the 1700s mania represented, along with idiotism or amenza, one of the damages to the capacity of judgement without fever or coma. It currently represents a diagnostic criterion within mood disorders.

Impairment

In a health awareness context, one intends handicap as any loss or irregularity due to structures or psychological, physiological or anatomic functions. (e.g. intellectual capacity, language, sensorial handicap, etc.)

Quality of Life models

Dissertations within the principle models of the quality of life produced by authors who have also written about disability under various titles. (see studies on Quality of Life models)

Non-discrimination

The principle of non-discrimination set down in policies and in the actions which follow them, the politician or institution that acts must always place their operator under preventive assessment with the purpose of avoiding discriminatory actions. To make things simpler, acting according to a non-discriminatory logic is the opposite of protecting the rights of those, discriminated by a policy or action that damages their human, civil and social rights, who must then appeal to the judicial authorities (or to another institutional level in charge of the control) to be defended. Italy does not have non-discriminative legislation, but should soon act on this to conform with the published EU indications. (Directive 78/EU).

Normalisation

Normalisation means guaranteeing a mentally retarded person a normal daily pace ,with his normal privacy, his mutual activities and responsibilities; a normal weekly pace, in his home place, a school or workplace, and free time, with a social interaction network; an annual pace, living the normal changes in each individual or family. Normalisation also means having the opportunities to go through the normal evolutive experiences of the life cycle: during childhood, with the need for safety and to succeed in the phases of development; during school, with the exploration and increase in abilities and experiences; during adolescence, maturity bringing choices in adult life.

Oligophrenia

Term was used to define a relatively severe intelligence deficiency caused by the insufficient development or retardation of intellectual capacity due to hereditary prenatal or congenital causes (gene disease or pathologic problems during pregnancy), perinatal (trauma during delivery) and postnatal (infectious disease during early childhood) of a heterogeneous nature, used to define a primitive intellectual weakness that would have led to an unsuccessful education corresponding to age and social position. The term is no longer used since it is found to be stigmatising and contains attributions of one "with little brain" directed at intellectually disabled people.

WHO

World Health Organisation. It deals with the disposal and use of international instruments corresponding to health problems. It works in close collaboration with the High Commission for Human Rights, with various Institutions and Member States that WHO supply with assistance to help them turn the disposal of these tools in an operative reality.

Disability pension

This further form of assistance is introduced to Italian regulations by Law 30.03.1971 no.118 (Art. 12). It is due to people who have been certified with total incapacity to work (100% civil invalidity). Being connected to the concept of "work", it is linked to people between 18 and 65 years of age and is also connected to individual income circumstances. This income limit was determined as 12,796 euro for 2003. The amount offered for the disability pension for 2003 is fixed at 223.90 euro per month for 13 instalments. It is compatible with companionship benefit while being incompatible with other welfare or support benefits granted for the same impairment caused during war, work or in service.

Individual intervention plan

Everything that is suggested to achieve a purpose or general objectives through the use of an articulated set of projects and programs which are synergic and organised per area; program: specific and ordered exhibition of articulated work mostly in phases and which includes the identification of objectives, contents, tools, methods, materials and assessments.

Overall take charge

Taking charge of a disabled person through an intervention plan process and the drawing up of a life plan which accompanies the person during all the phases of his life, articulating a series of answers to different needs.

Framework project

Conclusive document on the organisation of a service in its technical and organisational sections which specify the mission of the service, its logistical structural characteristics, the rehabilitative proposal and the resources used to carry it out.

Life project

Overall system of answers and interventions, which accompany the disabled person throughout their life cycle, by following the modification of needs in the different age group phases and in relation to ecosystems in which they are inserted, with the objective of guaranteeing the highest quality of life possible.

Individual project

The tool referring to the exigible right of a disabled person to have their "own" overall planned, coordinated assistance program which relates to the condition of need. The individual project is referred to among the basic legislation in an support field, but identified as unequivocally under the subjective right of Art. 14 of the law outline 328/2000 considered as the pivotal element to be referred to in the range of the take charge process of disabled people, and where necessary, of the family involved.
On request of the person concerned, the Municipality, on agreement by ASL ( Local Health Authority) is obliged to arrange the Individual project for that person, comprising of:

Standard regulations of the United Nations

20.12.1993: approval by the United Nations for the "standard rules for the equality of opportunities for handicapped people". The detailed document is divided into three sections (preliminary conditions for equal participation; areas of intervention to realise equal opportunities; execution measures). The "Standard Regulations" are not compulsory for the Member States, but they undoubtedly constitute a cause for political will of these same States. Among the aims contained in the Preface, some pivotal principles are represented that inform us of the actions taken up to now by the Institutions and, above all, the Associations for the Disabled and their families. For example:

Rehabilitation

Intervention through which abilities that were acquired in the past or present are restored within the person's behaviourial repertory. In the case of mental retardation, rehabilitation activities, which are intended in a strict sense, are reduced to situations in which the consequences of a traumatic or unhealthy event caused the person to lose the previously acquired capability, or spontaneously following rehabilitative intervention. Conventionally, the term rehabilitation is used to intend all technical, clinical and educational intervention in favour of the disabled, therefore it also includes recovery and support.

Health care rehabilitation

The Ministerial Decree dated 7 May 1998 includes "Guidelines for rehabilitation activities" and is the measure which takes in the agreement reached on the matter at the State/Regions conference. The document does not have an enforced regulation value, but was covered in the measure that established the health care and social-health care Essential Assistance Levels (DPCM 29.11.2001). The Guidelines define which health care rehabilitation activities are needed for the assessment, diagnostic, therapeutic interventions and other procedures aimed at bringing the person affected by impairment to contain or lessen his disability, and the disabled person to move, walk, speak, get dressed, eat, communicate and relate himself effectively in his family, working, scholastic or social environment.

The health care rehabilitation activities, with the exception of simple physical therapy for those with slight, fragmentary and/or temporary disabilities require the obligatory overall clinical taking charge of the person by making an individual rehabilitative project available and the realisation of such a project by means of one or two rehabilitative programs.

Social rehabilitation

The Ministerial Decree dated7 May 1998 includes "Guidelines for rehabilitation activities" and is the measure which takes in the agreement reached on the matter at the State/Regions conference. The document does not have an enforced regulation value, but was covered in the measure that established the health care and social-health care Essential Assistance Levels (DPCM 29.11.2001). The Guidelines define what social rehabilitation activities, the actions and interventions are aimed to guarantee the disabled person the maximum participation possible in a social life with minimum restrictions possible in their operative choices, independent of the severity of the impairments and the irreversible disabilities, aimed at containing the handicap condition.

Rearranging emoluments

Art.24 of the Law dated 8 November 2000 no.328, ordered that within 180 days from the enforcement of the Law (therefore by June 2001), the Government would have to promulgate a Legislative Decree for the rearrangement of cheques and benefits due to civil invalids. The outline of the legislative decree must attain to the agreement set in the Conference unified with Article 8 of the Legislative Decree dated 27.08.1997 no. 281 (State/Regions conference) as well as the opinions of the national associations on social promotion, the unions mainly represented at national level and the associations protecting its users, as well as communication with parliament on the opinions of the parliamentary committees.

The rearrangement decree is therefore presented as a measure of particular relevance and importance, both because it involves millions of people (the estimates that refer to people aged over 6 years, including those recovering in residential structures, indicate that there are about 2,800.000 disabled people in Italy) as well as representing an non-indifferent economic-financial mass, because attention has increased greatly on the sensitivity and the awareness for the rights of people with disabilities.

Art. 24 of Law 328 proposes two fundamental reforms:

Mental retardation

One intends a condition of disability characterised by significant limitations in intellectual functioning and in adaptive behaviour, manifested through conceptual or cognitive, social or practical abilities. The onset of this disability arises before reaching 18 years of age. In accordance with the most recent definition of mental retardation proposed by the American Association of Mental Retardation in 2002, the operative application of this definition makes the following statements essential: 1- limitations on current functioning must be considered within the public environment of companions, the same age and culture of the individual, for which mental retardation is being evaluated; 2- an efficient and valid assessment takes into consideration the cultural and linguistic differences, the difference in communication and in the sense-perceptive, motor and behaviourial factors; 3- as well as limitations, strong points exist in each individual; 4- a fundamental objective in describing limitations consists of the development of a profile of the support deemed as necessary; 5- with an appropriate system of personalised long-term supports, the existential functioning of the mentally retarded person generally shows improvement.

Health

Until 1946 individual health had coincided with freedom from illnesses and as a result health care intervention was substantiated in all actions involving defeating illness and restoration of health. That year, with the known definition on health offered by the World Health Organisation (WHO) " health is a state of complete physical, mental and social well-being, and is not just freedom from illness", with two important aspects introduced and recognised: - it is not amenable from biological data but the fundamental aspects are of psychological and social well-being - it is not the same as freedom from illness but is fully realised in a state of complete well-being.

Outpatient services

Organised services based on outpatient services to offer rehabilitation interventions to disabled people, mainly to those in the childhood and pre-adolescent age groups.

Domiciliary services

Made up of all social-support, social-health care and social-educational interventions offered in the home to allow single users or nuclear families to remain living at home. These services act as a bridge between the disabled person at risk of alienation, the family and the area with a support and protection function during social integration.

Residential facilities

These facilities represent a solution to temporary or permanent residential life for disabled people without a nuclear family, or for families who feel unable to manage. The services are organised over 24 hours in a manner in which the person receives a range of extensive interventions according to their needs and the individual intervention plan. In Italy, based on specific regional regulations, there is a vast range of residential services differentiated both by the age of the person and the level of severity of the disability.

Semi-residential services

Day services in which the person stays from morning to afternoon while receiving a range of interventions according to his needs and the individual intervention plan. In Italy, based on specific regional regulations, there is a vast range of semi-residential services differentiated both by the age of the person and the level of severity of the disability. These services represent a support structure for family life with the aim of maintaining a disabled person with his own nuclear family.

Subnormality

Term was used to define a relatively severe intelligence deficiency caused by the insufficient development or retardation of intellectual capacity due to hereditary prenatal or congenital causes (gene disease or pathologic problems during pregnancy), perinatal (trauma during delivery) and postnatal (infectious disease during early childhood) of a heterogeneous nature, used to define a primitive intellectual weakness that would have led to an unsuccessful education corresponding to age and social position. The term is no longer used due to its stigmatising and negative nature, since it contains a derogatory tone "below the norm".

Treaty of Amsterdam

(Article 13) - "Without prejudice for other regulations on these issues, this treaty and its limits of power conferred by the same Community, the Council deliberating on the unamity of the proposal by the Commission and upon consultation with the European Parliament can intervene to combat discrimination based on sex, racial or ethnic origins, on religious fare, on disability, on age or sexual orientation."

Assessment

Carried out by observers, psychometrics and clinicians who agree to draft up a balance of competencies or a functional diagnosis.

Glossary

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