Social Security and Welfare Legislation
The feature of Rare Diseases, as well as the problems related to prevention, diagnosis, therapy and care, require considerable commitment from all who are involved.
This can be accomplished through the interaction among those who do their best to reach their goals, such as patients, family members, health care professionals, psychologists, social workers and teachers.
Furthermore, there are several volunteer associations whose members are committed to spreading knowledge on Rare Diseases issues and to keeping up ties among patients and among family members.
The following information is a brief guide to help the reader deal with the extensive and complex legislation regarding impairment, disability and Rare Diseases. We kindly invite you to visit this section and to send us any suggestions or to point out anything that may be missing.
SCHOOL and MINORS
Law n. 118, dated March 30th, 1971 (pdf), ratifies the right of disabled and civilian invalids to benefit from basic services, such as the right to receive an education. Disabled and civilian invalids are terms that refer to people who are affected by congenital or acquired disorders, or by mental deficiency caused by sensory and functional impairment. This definition applies to people whose working capability has been reduced by no less than 1/3 and, as far as minors are concerned, it applies to people who show persistent difficulty performing the functions that are appropriate for their age.
Regulations related to education are:
- Article n. 28 "Measures for school attendance", ensures free transportation from home to school, free access to school, and for the severely handicapped, it ensures special care during the school day.
- Article n. 29 "Schooling at in-patient and rehabilitation centres", only concerns people who cannot attend public school, and it involves setting up classes with specifically assigned teachers.
- Article n. 30 "School and University tuition exemption",guarantees low- income families of the handicapped exemption from payment of school or university tuition fees as well as from other taxes.
Law n. 517, dated August 4th, 1977 (pdf), acknowledges the right of the handicapped and of the disabled to attend the same public schools that are available to all.
This regulation partly overcomes the idea of a school system based on the principal of "selection", which was what led to the creation of "special" classes and schools, thus turning the concept of selection into the opposite of integration.
For example, among their activities, schools must enact forms of integration with the help of specialised teachers.
In particular, articles 2 and 7 state: "Appropriate, specialised integration must be guaranteed, as must socio-pedagogic services and specific support in line with the responsibilities of the State and of the Local Agencies.
Law n.104, dated February 5th , 1992 (pdf) regards the care, social integration and rights of the handicapped. This law asserts the general principles on issues concerning family, education, employment and society.
There are several exhaustive regulations regarding education:
- Article n.12 "The Right to Education and Schooling": its 10 paragraphs clarify which goals should be pursued from nursery school through University in order to guarantee the handicapped the right to an education.
- Article n.13 "School Integration": states that it is essential to plan and coordinate school services with health, social care, cultural, sports and recreational services.
- Article n.14 "How to implement Integration": concerns training and keeping teachers of the handicapped up to date.
- Article n.15 "Working groups for school integration": defines the structure of the working groups that cooperate in educational and integration activities.
- Article n.16 "Evaluating Performance and examining students": deals with how to evaluate handicapped students from compulsory schooling through University.
- Article n.17 "Professional training": he various paragraphs clarify how to place the handicapped who are unable to attend regular schools into professional training centres.
Law n. 9, dated January 20th, 1999, issues urgent orders to increase the duration of compulsory education from 8 to 10 years, thus raising the minimum compulsory age limit from 14 to 16 years of age.
Article n. 1, point 9 states that: "When the law becomes effective, handicapped students will be subject to the same rules regarding scholastic integration throughout the mandatory education period."
Law n.328 , November 8th, 2000 (pdf) deals with "Establishment of a system which integrates interventions and welfare services".
Article n. 14 "Individual projects for the disabled" states that in order to fully integrate the disabled into family and social environments, as well as into employment and education settings, upon request of a disabled person, the local health service together with the municipality must establish an individual project for the applicant.
Article n.16 "Enhancement and support of Family responsibilities" states that this integrated system acknowledges and supports the family’s role in shaping and taking care of its members. This system also promotes well-being and assures active participation in essential social care services throughout the country.
Law n.4, dated January 10th, 2004 regarding "Rules to promote computer access by the disabled" states that these rules apply to all the training and teaching material used by all schools and universities.
Furthermore, it establishes that the agreements between the Ministry of Education, the University and the book publishers' associations regarding the supply of books to school libraries must always include digital copies of basic teaching material, which shall always be available to disabled students and to their teachers.
CULTURE
Ministerial Decree n.239, dated April 20th, 2006 (pdf), replaces article 4 of Ministerial Decree n. 507, dated December 11th, 1997, that stated which persons had the right to free admission to cultural sites, such as monuments, museums, galleries, archeology sites, parks, monumental gardens. The more recent decree extended the right to free admission to the disabled. In particular, it establishes that the right to free admission is reserved to citizens of the European Community who are "handicapped, and to a family member or other accompanying person who can prove that they work for social and health care services".
EMPLOYMENT
The very first law to deal with employment-related matters involving disabled and invalid civilians was Law n. 118, dated March 30th, 1971 (pdf).
- Article n. 23 regarding "Professional education, qualifications and retraining, guaranteed employment and relationship measures" states that the Ministry of Labor and Welfare must provide special management which allows the invalid and the disabled to have access to guidance, education, and vocational training and retraining courses. The number of positions that are available to the invalid and the disabled in the vocational training courses is decided on the basis of the demand from the provincial employment offices.
- Article n. 24 "Course attendance allowance" grants invalid and disabled civilians a daily attendance allowance, even if they already receive unemployment insurance benefits.
- Article n. 25 "Protected employment systems" ensure that both the Work and the Health Ministries promote the rules and regulations that are needed to provide special categories of the disabled with protected employment systems.
- Article n. 26 "Medical Treatment Leave" allows both disabled and civilian invalids having a certified decrease in working capability of no less than 66 % to take an additional annual leave of up to 30 days, which must be authorised by a physician.
Law n.104, dated February 5th, 1992 (pdf), includes several articles concerning the right to employment of the handicapped:
- Article n. 18 states that each region shall set up a Registry which will include agencies, institutions and social employment and services cooperatives, as well as specialised placement centres, and volunteer associations and organisations which endeavor to help the handicapped fit into the working world.
- Article n. 19 "Subjects who are entitled to benefit from mandatory employment quotas"; people with mental disabilities are also among those who are entitled to benefit from mandatory employment quotas.
- Article n. 20 "Examinations in public competitions and for professional certification" states which special terms can be applied to people affected by a specific handicap, for instance the need for extra time during examinations.
- Article n. 21 deals with "Priority entitlement in choosing employment location" for the handicapped hired by public agencies.
- Article n. 22 "Verification for public and private employment" establishes that the handicapped need not provide a health certificate when applying for a job.
Law n.68, dated March 12th, 1999 (pdf), "Regulations concerning the right to employment of the disabled" aims to promote integration of the disabled into the working world through support services and focused employment. It applies to:
- working aged people with physical, psychological, sensory and mental disabilities.
- the industrially disabled
- the sight and hearing impaired
- war and civilian invalids
Moreover, P.R. Decree n. 333, dated October 10th, 2000, (pdf), promulgates the regulations that enact Law n. 68 , dated March 12th, 1999 concerning the right of the disabled to work.
- Article n. 1 specifies who has the right to be placed on specific lists, and states "The Disabled" referring to the previous definition stated in Law n. 68.
- Article n. 9 is about rankings, and confirms the validity of Law n. 68 (Articles n. 8 and n. 10 ) that specifies the agreements among private employers, social cooperatives or freelance disabled subjects and focused employment.
La Piedmont Regional Law n. 29, dated August 2000 (pdf), "Regional Fund for the employment of the disabled" establishes a Fund to finance the regional plan for the employment of the disabled as well as to finance support services and focused employment.
PARENTS AND DISABLED CHILDREN
Law May 27th, 1991,n. 176 (pdf), guarantees full implementation of the “ Declaration of the Rights of the Child ” signed in New York on November 20th, 1989.
- Article n.1 says that the Declaration defines a child as being "any human being below 18 years of age, unless the country’s legislation concerning adult age is different".
- Article n.23 Its 4 paragraphs ratify the right of mentally or physically disabled children to live a decent life, in such conditions apt to assure them dignity, independence and active participation in everyday social life. It also states that all countries which signed the Declaration must acknowledge the right of these subjects to receive special care and adequate financial aid. However, the aim of this aid is to assure that the children have access to education, training, health care, rehabilitation, vocational training and recreational activities.
Article 23 of Law n. 104, February 5th, 1992 (pdf), deals with: "Paid leave of absence for disabled workers in dire need or for family members taking care of a handicapped subject".
Section 1 states that either the mother or the father of an underage handicapped child (including adopted children) in dire need may extend their optional leave of absence for up to 2 years, though only if the underage person does not reside in a 24-hour, special care centre. The degree of the disability must be evaluated on the basis of paragraphs n.3 and n. 4 of Law n. 104.
Section 2 gives the parents of a disabled child the choice of taking a 2 hour daily leave rather than extending their optional leave of absence.
TRANSPORTATION
Law n.104 dated February 5th, 1992 (pdf), deals with "Collective transportation and mobility", "Individual transportation", "Special measures for vehicles of the handicapped".
- Article n.26 regulates what measures must be taken in order for the handicapped to benefit, as do all other citizens, from public transportation, either by specially equipped vehicles or by alternative forms of transportation.
- Article n.27 states that local health services must pay at least 20 % of the total expenses to modify cars and other vehicles for people with permanent motor impairments who hold A, B or C level driving licenses.
- Article n.28 refers to reserved handicap parking spaces, both with regards to public parking areas and to private ones. In order to park in a reserved parking spot a "handicap parking permit" must be displayed on the windscreen.
Law n. 118, dated March 30th, 1971 (pdf):
- Article n.27 "Architectural barriers and public transport" states that in order to make social interaction easier for the disabled and for civilian invalids, public buildings as well as newly built schools must comply with the Public Works Ministry Circular Letter dated June 15th, 1968 which deals with the removal of architectural barriers. Furthermore, it states that public transportation,such as tramways and undergrounds must be accessible to the motor impaired and that all cinemas, theatres and exhibition areas must be reachable and must provide reserved areas for the handicapped.
- Article n.28 "School attendance measures" guarantees free of charge, return transportation from home to school or to vocational training courses to all non self sufficient disabled and civilian invalid individuals. Furthermore, it foresees easy access into buildings, and specialised, individual assistance during the school day, when necessary.
SPORT
Physical activity is extremely important for social integration, for relationships, and for maintaining and improving one’s health.
Legge Quadro 5 Febbraio, 1992 n.118 (pdf), deals with the care, social integration and rights of the handicapped, and includes paragraphs related to sports activities.
- Article n. 7 deals with "Care and Rehabilitation". Its goal is to set up programmes aimed at integrating health and social services in order to enhance the abilities of each handicapped individual through the involvement of both the family and the community. Subsection E of this paragraph states that in order to do so, adaptation of both the equipment and the staff providing the services related to education, sport, social and free time is needed.
- Article n. 23 "Removal of barriers preventing sports, tourism and recreational activities" states that practicing sports is highly endorsed. Furthermore, within one year after coming into effect, a decree must be issued to define the terms of granting eligibility to the handicapped to participate in competitive sports. Moreover, each region and municipality, as well as the International Olympic Committee ( CONI) is responsible for removing any existing architectural barriers in the sports facilities in order to make them accessible to the handicapped.
Ministerial Decree n. 64 , dated March 4th, 1993 (pdf), regards "Establishing protocols to grant the handicapped authorisation to participate in competitive sports".
Article n. 1 states that handicapped individuals practicing competitive sports must undergo occasional monitoring.
The following 8 paragraphs outline who must ascertain the eligibility of the individuals to compete, as well as who must issue the eligibility certificates, how long the certificates will be valid for, and other related matters.
Law n. 162, May 21st, 1998 (pdf), concerns support measures in favour of the severely handicapped, and it modifies some of the articles in Law n. 104 dated 1992.
Law n.198, dated July 15th, 2003 (pdf) "Rules to promote the practice of sports among the disabled" establishes the Italian Para-Olympic Committee, an agency whose job is not limited solely to training competitive teams to participate in international competitions. Indeed, the Ministerial Decree dated April 8th, 2004, acknowledges the social value of the Agency whose aim is to guarantee the right to practice all sports by "promoting the greatest distribution of sports for disabled individuals of all ages".
The aim is for all disabled individuals to improve their well-being and to find the best way to live their lives through sports as a mean for recovery, cultural and physical growth, and education.
ASSESSMENT AND ACKNOWLEDGEMENT
Law n. 104, dated February 5th, 1992 (pdf) deals with the acknowledgment of a handicap.
- Article n.3 states that there are some benefits that the handicapped are entitled to.
- Article n.4 states that the local health services (ASL)shall set up a medical committee that must also include a social worker and an expert employed by the ASL. The committee will be responsible for assessing: the handicap itself; the need for permanent social care; the complexity of the individual's situation. An application form requesting assessment of the handicap is available at the local health services office. It must be filled out and delivered, together with a medical certificate, to the local health services office closest to where the applicant resides.
Should a severe handicap be acknowledged, the benefits will include: tax allowance, paid work leave, additional integration support, equipment - such as a computer, fax, videophone, and other devices, financial aid to eliminate architectural barriers, financial aid to either purchase or to adapt private motor vehicles, and exemption from road tax payment.
Law n. 118, dated March 30th, 1971 states that in order to obtain acknowledgement of civilian invalidity, one must fill out the appropriate application form at the local health services (ASL) office closest to where the applicant resides.
Within 3 months the Medical committee of the ASL will assess the person and may grant certification of the handicap and a statement concerning the degree of disability that has been assigned to the applicant.
This acknowledgement of a disability implies access to the following benefits:
An allowance paid to an accompanying person, disability allowance or a pension due to inability to work, school attendance allowance for under-aged individuals, training courses, a special employment list allowing them priority access, supply of necessary medical devices, special terms for the assignment of public housing.
ASSISTANCE TO THE INDIVIDUAL
Article n. 9 of Law n. 104, dated February 5th, 1992 (pdf) states that the personal assistance service is for citizens whose personal autonomy is severely limited and cannot be overcome by means of technical equipment or computers, prostheses or any type of support which is meant to help the individual be more self-sufficient and better integrated in every-day life. This personal assistance service also includes providing interpreters for the hearing impaired, and is in addition to other existing health and welfare services. It may avail itself of the services of individuals performing voluntary civilian service, volunteers, and patients' associations.
Article n.10 states that the Municipality, the provincial government and the Local Health Service may use their own financial resources to set up assisted living facilities and socio-rehabilitation centres for the severely handicapped and that they may also establish services to safeguard and to socially integrate individuals who can no longer depend upon their own families. Other organisations may also contribute funds towards the construction and support of these assisted living facilities.
CARE AND REHABILITATION, and TREATMENT ABROAD
In order to ensure that treatment and rehabilitation of the handicapped are both carried out thanks to the integrated Health and Welfare services and with the involvement of the family and the community, Article n. 7 of Law n. 104, dated 1992 (pdf), guarantees treatment at outpatient clinics, at home, and at socio-rehabilitation centres.
The law also includes provisions for the supply and repair of equipment, prostheses and technological devices that are needed to treat the impairments of the disabled.
Furthermore, the Regional governments will provide all the necessary information regarding services and assistance that is available in Italy and abroad.