Independent Living and some Italian Experiences

by Raffaello Belli, 2003-03,
Presented at the European Network on Independent Living (ENIL) conference in Southampton, England, 7-9 March 2003

(Another presentation at the conference: Rajkov, Gordana. 2003. "Inependent Living and Yugoslav Experience.")

Negative attitudes

There had been many negative attitudes towards direct payments in Italy. One of the reasons is attributed to the opposition of powerful organizations who run big institutions. Furthermore many people expect the authorities to solve any of their problems.

Another reason is due to the fact that in Italy many youngsters are accustomed to live with their families until they are thirty or more. This implies that many people become used to running their own lifes very late. As a consequence some people with disabilities do not go to live on their own. On the contrary they avoid being segregated in big institutions by living in small self-help groups, whose Italian names could be literally translated into English with the words boarding houses, or restricted group home, or community.

Finally, many authorities look on direct payments as a way to save money. This means that limited funds were made available for this purpose.

Positive changes

Some positive changes regarding direct payments are taking place in Italy. As legal science examins disability issues in more depth, it becomes more evident that these people have the basic right to run their own lives.

Independent Living philosophy is spreading all over Italy and it is very important in order to change attitudes regarding direct payments. The Independent Living movement was born in Italy fourteen years ago. It is not very strong, but it is working and some successes have been achieved.

In Italy there have been many improvements that allow all youngsters with disabilities to attend regular schools, and it is believed that Italy is the most advanced countries in the world in this field. When young people with disabilities attend regular schools this stimulates them to be more independent and more aware as regards their needs, it is likewise it change their self-perception. Moreover able-bodied children are thought to see people with disabilities as not different from them. This increases people with disabilities’ wish to live one’s own life and, as a consequence, it increases the demand of direct payments too. Moreover it changes social attitude towards people with disabilities because able-bodied youngsters are used to seeing them as ordinary people.

In the last decades many youths with disabilities avoided being closed in institutions as they have been living with their families. Nowadays, with the aging of their parents, this is no more possible. Nevertheless it is difficult to close these people in institutions (large or small, it makes no difference) because they are not used to it. This forces some people with disabilities to become able to run their own lives. As a consequence, their demand for direct payments increases.

As the quota of elderly people increases, instead of taking them to old people’s homes the authorities try to use direct payments as a way to save money. This improves social attitude as regards direct payments.

A few years ago in Italy the authorities suspended state allowances to many people saying their disabilities were not enough to entitle them to those allowances. These people went to court that ruled that most of them have disabilities which are so severe as to entitle them to those allowances. This was a defeat for the Government. During a very important conference in Rome both the Prime Minister and the Minister for Social Affairs clearly stated that the authorities were not right in taking away those allowances. I think, if they are used properly, these words may be helpful in order to spread direct payments in Italy.

Constitutional principles

The Italian Constitution carries some very important principles related to self-determination of people with disabilities. First of all it recognises some basic freedoms. Among these freedoms there are: personal freedom, privacy, the right to go out any time desired, the freedom to decide upon one’s daily life and to meet other people, the freedom of expressing one’s thoughts.

Secondly it rules that nobody may violate these freedoms. Thirdly the Constitution rules that these freedoms apply to everybody regardless of his/her personal conditions. Both legal science and case law perfectly agree that these freedoms fully apply to people with disabilities too.

Fourthly it is not enough to recognise these freedoms in abstract. It is a basic duty of the Republic to provide everybody enough support in order to actually enjoy these freedoms. This point is valid also because in the Italian Consitution solidarity is undeniable, that is, no authority and no person may deny any help to persons who need it. Some problems relate to the help to provide. They are: when, how much, which sort, who is entitled.

Lastly, whenever possible, any law must be interpreted in such a way as to enforce the application of these Constitutional principles .

The "indennità di accompagnamento"

As regards resources for self-determination for some people with disabilities now it is possible to have an important monthly allowance, whose Italian name is "indennità di accompagnamento". Its amount is the same for the user wherever he/she lives in the country. When one is entitled the amount of this allowance is the same regardless the severity of the impairment. In order to be entitled for such an allowance one must have physical, mental or psychic impairments and it is necessary to overcome a medical test.

It is possible to receive this allowance even if the person with disabilities has a job. It is paid on regular basis, regardless user’s income (but sometimes the government tries to change this point), and it can be used by people with disabilities to pay their attendants chosen by them. No invoice and no document is required in order to know how the money is spent by the user.

Nevertheless this allowance amounts to € 432 a month, only, just enough to pay for about 50 hours a month of personal assistance to attendants paid in the form of illegal work. The name of the allowance for blind people is the same, but its amount is slightly higher. The name of the allowance for deaf people is different, it is “indennità per la comunicazione”, and its amount is much lower. Direct payments for veterans are a very different matter.

The importance of the allowance "indennità di accompagnamento" is due to the fact that, once one is entitled to it, it is a legal right. That is, if authorities refuse to entitle you to it, but you think you should be entitled, you may ask the court to issue a ruling to entitle you to it. Moreover if you are entitled and the authorities should stop payments, you may go to court to have money.

According to many people, in order to be entitled to this allowance, it is necessary to have many severe impairments. I think that, according to the legal point of view, one may and should be entitled when personal assistance is essential in order to enjoy a basic freedom at least. Sometimes this happens.

Municipalities duties

According to the law it is duty of the municipalities to provide help to people with disabilities. If we agree that direct payments are essential for self-determination, and if we agree that self-determination is the foundation of the Italian Constitution, it is enough to affirm that municipalities must provide direct payments to people with disabilities.

So much so that in some municipalities, people with disabilities get some money, very limited amount of money, to pay for their attendants. One of the worst aspects is that it is not a legal right, but you may have it according to the discretion of municipalities. Therefore very crucial decisions for your life may be taken away at any moment, and with little possibilities of legal appeal. According to a legal point of view this means that it is a charity.

Mostly this money from municipalities is only available to people with low income. Moreover, it is more difficult to get if the help of family members’ is available. These funds are available regardless of the reason of one’s impairments. When municipalities do not provide any direct payment it is possible to go to court to force them to provide it.

The first problem is that, nowadays, this sort of recourse to court is unusual and its success could not be ensured, as there is a lack of case law. The second problem is that Italy is a country with Roman Law. In front of the judge it is possible to get money, but it is not possible to have enough money for self-determination.

The third problem is that to live with impairments is usually more difficult than to live without them. But to go to court is not exactly the same as enjoying a cup of coffee. Therefore the recourse to the law courts should not be necessary in order to have direct payments. They should be available without any legal trouble. These are the main reasons why legislation on direct payments is necessary.

In any case, thanks to our pressure on local politicians, some years ago the municipality of Florence (the city where I live) was the first in Italy to have in its budget a program for Independent Living. This confirms that, when basic freedoms are in the Constitution, if a job is well done, attempts to provide direct payments may be successful. Of course, when I say “it may be successful”, I do not mean at all that we get enough money.

The law No. 104 of 1992

Since February 1992 in Italy we have the law No. 104. It is a comprehensive law for people with disabilities. It is significant to note that, as regards personal assistance, it does not provide anything directly to people with disabilities. In this area the law established only some rules for regional parliaments and governments. More exactly it emphasizes on freedoms (article No. 1) for people with disabilities and it recognises the choices among different provisions of services (article No. 5). If we read this law according to Constitutional principles, it should mean the provision of direct payments too. But this law was not helpful in such an area because it did not specify that regional authorities «must» provide. On the contrary it established that regional authorities «might» provide.

It is necessary to be aware of this point because it is a very important law in the field of disability in Italy, but, as regards personal assistance and direct payments, it was almost useless.

Tuscany Region

In those years in Tuscany, the region where I live, we were successful in spreading the idea of independent living thanks to street demonstrations and to lobbying. Regional parliament was forced to pass some decision on independent living. And since 1997 we have a regional law which provides for direct payments for independent living. It means that any person with disabilities, who needs personal assistance for basic freedoms, may get this money. It is not a legal right, but it is not even very far from being a legal right. Problems are that it is impossible to get enough money and that many local authorities do not understand the matter.

The law No. 162 of 1998

The independent living idea has been so powerful that the national parliament passed a law just few months later. It could be important as regards both personal assistance and direct payments.

This new law rules that personal assistance «must» be provided to persons with disabilities. The law of 1992 ruled that it might be provided. The new law also rules that independent living is a «right» for people with disabilities.

Last but not least the law specifies that, if a person with disabilities needs help to enjoy just one basic freedom, it is enough to be entitled to direct payments for personal assistance. Of course it does not apply to any freedom. It only works when personal assistance is necessary to enjoy those freedoms which are recognised as “basic” by the Consitution. Moreover, if one needs just a little personal assistance, it is not enough to be entitled. It only works if a lot of help is necessary. But the involvement of just one basic freedom is enough.

Well, this law could be important because, according to it, direct payments should be a right and the goal should be the enjoyment of every basic freedom.

Unfortunately there are two main problems. First of all it does not specify exactly how much funds must be provided to each user. Therefore things can be difficult when not enough money is provided. The second problem is that this law No. 162 does not spell out directly regarding direct payments which rights exist. On the contrary this law governs rules related to laws which will be passed by regional parliaments. The big problem is due to the fact that, if regional parliaments do not pass any rule, nobody may ask to any judge to force them to pass a rule. The only way is to group together many people with disabilities and to do lobbying and demonstrations.

I think that, according to this law, money should be available also when the help of family members exists. It is not clear if the money provided by this law will be only available to people with disabilities with a low income and a small or no estate. These funds should be availabe regardless of the reason why one has impairments.

The law 328 of 2000

Three years ago the Italian Parliament passed a new comprehensive law on social services. However it lays emphasis on social services as a right and envisages direct payments. The problem is that in this regard any decision is postponed depending on programs of the Government and of regional and local authorities especially.

I mean that nowadays independent living depends upon decisions of regional governments and parliaments. It is easier where independent living movement is strong because lobbing on regional parliament is easier than as regards national parliament. But it is more difficult where independent living movement is not strong.

Moreover the law lays emphasis both on rights and on availability of funds. This is not correct because rights must be guaranteed regardless of the budget decisions. That is, when it is said no more funds are available, it is not because they do not exists. It is because more funds are provided for other projects which are not legal rights. But public money should be provided first of all to fund those facilities which are legal rights.

How does it actually work?

In Italy Independent Living movement started later than in other countries, but it is growing fast enough. I think social attitude have been changing quickly in a positive way. In Italy we put emphasis on the importance that direct payments must be a legal right.

Direct payments are spreading at a faster rate than Centers for Independent Living. I mean that some people are getting direct payments all over Italy, but, to my knowledge, we have just three Centers for Independent Living and these are not very strong. Therefore there may be the risk that people with disabilities are successful in getting direct payments, but they are not able to manage this money for self-determination.

In Rome, the capital city, a new local council rule is in force. It appears that it affects few people with disabilities, but anyone of them can get some money for IL. In Southern Italy it is still very difficult to get direct payments. In the North some programs are working in main cities. It is good that people involved in the programs get more money than in the rest of Italy, sometimes it is enough to pay 12 hours a day of personal assistance.

It means that more empowerment of disabled people is spreading. And more disabled people know the independent living idea. Problems are: it is not a legal right, very few people with disabilities are involved and direct payments will stop when the budget of programs finishes.

Tuscany Region again

In Tuscany, following the success of street demonstrations and the regional law which provides for direct payments for Independent Living, we are going forward.

Money

It is necessary to have more money and to get it as a legal right. In Firenze a very important decision of a judge forced the municipality to increase money to pay PA for IL and sentenced that it is a legal right. The judge also ruled that IL is essential to be in good health. Of course it is true just for those disabled people who wish IL. But it is important both because there is no doubt that to be in good health is a basic right and because it also means that to be in good health is a social matter too.

Nowadays in Firenze more than 300 disabled people receive direct payments. Many of them receive € 2-300 a month, some of them receive €2,000-2,500 a month.

There are very big differences between Firenze (the main city of the region) and small municipalities. In small municipalities it is very difficult to get direct payments and they are €2-300 a month.

This is one of the reasons because we are pressing on regional government to have a law. By next summer a monthly allowance for personal assistance could pass by regional law It would be a legal right and it would be a very important victory. The problem to solve is the amount of money. Authorities would like to force us to give very low salaries to PAs. We cannot accept this point and many fights will be necessary.

Attitudes

In Firenze as regards IL issues we usually talk to the major directly, a young man, who went to a faculty of the University of Firenze at the same time when some members of our CIL went to that faculty. Moreover we put the major in a wheelchair in the city center. That is CIL was on the first page of every newspaper and it forced social workers and the municipality staff to be more kind.

Three weeks ago the national government organized a very important conference on disability. The vice president of Tuscan regional government said they are willing to improve IL opportunities. It was a success of our fights since no other speaker from institutions said anything as regards IL.

Now, in Tuscany, we can say that IL is one of the main topic as regards authorities policy on disability.

Awareness

A big problem is due to the fact it is not enough to have direct payments. It is necessary to know what IL is. Just few disabled people are aware of this point. Most of disabled people do not know what IL is in fact.

For this purpose we have peer counseling and we organize meetings. It is hard work because it is just one CIL for all the regional territory. And it is possible to work for this aim only if we have good PAs for CIL’a staff at least. It is planned to develop more self help and peer counseling work in the last six months of this year.

Personal assistants

It is easy enough to find people who would like to "help" disabled people. It is difficult to find people who have the will and the abilities to work as PA for IL. That is it is difficult to find PAs who are able to work according user's needs and choices. But it is useless to have money for IL if it is non possible to have good PAs.

In order to have a list of PAs we are working to a long form to be filled by candidates. It is seven pages, it is near to be finished. It should help to select the people who could have good attitudes to be PAs. It works.

We are also working to a test. We are at midway to finish the test. It should be filled together with the form and it should help to select PAs more carefully.

When they pass both the form and the test candidates are admitted to a course for 40 hours. Contents of the course are decided by users only. 80% of the teaching in the course is from users, 20% is from our allies. Admission at the course is very difficult for people who worked for social services or institutions.

It is essential to avoid misunderstanding as regards the course. It is NOT a training course. It is just to teach IL philosophy and good attitudes. It is useless if students are admitted without any good selection. The course is helpful if students are admitted after a good selection.

At the end of the course CIL keeps a list of people who could be good PAs.

If he/she wants the user meet people who are in the list and he/she chooses if anyone in the list could be a good PA for him/her. Training is provided by the user.

Further aims

Further aims are:

• IL and people with mental health
• IL and aging people
• more exchanges of ideas and experiences with CILs in Italia and in Europe.