Professor Christos Alexiou, President of the Greek Society for the Protection of Autistic People, father of two autistic children.
In the Resolution approved by the Assembly of People with Special Needs in Brussels on the 3rd of December 1993, and in the Report which was published on 7th of December 1995, in the framework of the European Day of Disabled Persons, it is pointed out the discriminatory treatment which persons with special needs suffer in relation to other citizens, within the member states of the European Union, and it is asked, during the revision of the Treaty of the European Union, that the legislation of the Union be reconsidered and that a provision, with the addition of a Clause, be included against this discriminatory treatment.
My purpose in this paper is to point out the discriminatory treatment which persons with Autism and their families suffer in relation to other people with special needs and their families.
In the limited time which I have it is not possible to do anything more than to bring up the problem for discussion in order to be taken into account, considering the formation of our policy as a European movement for the assertion of the rights of people with Autism and their families from the member states as well as from the European Union.
The facts which I use in order to prove this discriminatory treatment of the people with Autism in relation to other people with special needs, come from situations in which these persons with Autism and their families live in my country, and from the programmes of the European Union for people with special needs. As a starting and reference point, I use the "Standard Rules on the Equalization of the Opportunities for persons with Disabilities" which was adopted by the General Assembly of the United Nations in the 48th Session on the 20th of December 1993.
These Standard Rules, which have been developed on the basis of the experience of the United Nations gained during the United Nations Decade of Disabled Persons ( 1983-1992), have as their political and moral foundation, the International Bill of Human Rights, comprising the Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights and the International Covenant on Civil and Political Rights, the Convention on the Rights of the Child and the Convention on the Elimination of All Forms of Discrimination against Women, as well as the World Programme of Action concerning Disabled Persons. As it is stated in the text of the Resolution, "although the Rules are not compulsory, they imply a strong moral and political commitment on behalf of States to take action for the equalization of opportunities for persons with disabilities, offer an instrument for policy- making and action to persons with disabilities and their organizations, they provide a basis for technical and economic cooperation among States , the United Nations and other international organisations".
In so far as my country is concerned, during the United Nations Decade of Disabled Persons (1983-1992) as well as during the following 3 years (1993-1995), although excessively inadequate, (taking into account the previous situation), there have been some notable efforts of improvement in the areas of education and welfare for the blind, the deaf , the cerebral palsied, the paraplegic, the mentally deficient and other disabled people, but for the people with Autism, (with the exception of the plan for the creation of a National Network of Services for Autistic People, which was announced by the Secretary General of Welfare Mr. Kouroumplis in the closing session of the Conference "Searching for Ariadne's Thread" , but it will take years to be realized), there has not been any such effort up to now. Consequently, in my country there is a discriminatory treatment of the disabled people in general which makes them second- class citizens among the people of Greece, and there is another, worse, discriminatory treatment of the people with Autism in comparison to the discrimination of the other disabled people which makes them second -class citizens among the people with special needs, or third- class citizens among the people of Greece.
Let me support this statement with some concrete facts:
The Rule 2 on the Equalization of Opportunities for Persons with Disabilities, specifies that "States should ensure the provision of effective medical care to persons with disabilities", providing "programmes run by multidisciplinary teams of professionals for early detection, assessment and treatment of impairment", providing medical and paramedical
personnel adequately trained and equipped to give medical care to persons with disabilities", and providing adequate and continuous training to medical, paramedical and related personnel so that they do not give inappropriate advice to parents, thus restricting options for their children".
Within the framework of the Greek system of medical care all this is possible to be provided to persons who are suffering from physical, sensory, psychological and, to some extent, mental disabilities. But the system does not provide, or provides very inadequately, all this to people with Autism. There is not even one established multidisciplinary team of professionals for diagnosis , assessment and treatment of persons with Autism. The medical, paramedical and related personnel which has theoretical knowledge and adequate practical experience in providing proper medical care to persons with Autism and proper advice to the parents is minimal, and the State is doing nothing to supplement this insufficiency. There are, of course, some able and sensitive Child - Psychiatrists, Psychologists, Medical Doctors, Nurses, and Social Workers, working in hospitals, centres of mental health, medical educational centres, or even privately, who are doing their best under the circumstances, but their efforts are by no means adequate to make up the insufficiency of the States medical system with regard to Autism, and meet the needs of the autistic people and their parents.
Let me give you an example: Until last year there was not in the whole of the Greek medical system a dental clinic or a dentist's surgery sufficiently equipped and staffed with specially trained personnel in order to provide dental treatment to autistic and mentally deficient adults who are not cooperative with the doctors, and when anaesthesia for a dental or any kind of medical treatment is needed. Now there is only one such surgery in a State Hospital in Athens and this is insufficiently equipped and staffed and relies upon the efforts of one sensitive dentist, the one who worked hard to create it, and her assistant.
The result is that, most of the persons with Autism in Greece do not have the much needed diagnosis and assessment, they do not have appropriate treatment and care, psychiatrists unfamiliar with Autism treat them usually with drugs appropriate for psychotic but not for autistic persons, during a crisis or when the parents die they put them in psychiatric hospitals, or in asylums. The parents do not have appropriate advice from experienced professionals specialized in Autism and, very often, unaware and in dispair, they turn to some merchants of human misfortune who promise therapy for their children, or end in a fatalistic resignation to any further effort.
Rule 3 lays down that "States should ensure the provision of rehabilitation services to persons with disabilities in order for them to reach and sustain their optimum level of independence and functioning. They should develop national rehabilitation programmes for all groups of Persons with disabilities, based on the actual individual needs of these persons and on the principles of full participation and equality. The Resolution regards rehabilitation as a fundamental "process aimed at enabling persons with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric and /or social functional level of independence".
Although only a few in comparison with the magnitude of the problem, and with few noticeable exceptions, inadequate in quality, there have been such programmes for persons with physical, sensory, intellectual and psychiatric disabilities developed. One of the noticeable exceptions is related to the famous asylum of Leros. But not even one such programme has been developed for persons with Autism.
Not even one centre well staffed with experienced specialists in Autism, has been established in order to provide adequate advice to parents.
Rule 4 lays down that "States should ensure the development and supply of support services, including assistive devices for persons with disabilities, to assist them to increase their level of independence in their daily living and to exercise their rights".
To the persons with physical or sensory disabilities in Greece, financial assistance is provided in order to obtain the assistive devices which they need, as was provided some years ago tax relief for the purchase of a car, an important allowance in Greece, where tax almost doubles the price of a car.
For the autistic people, however it has not been raised even as a thought that computer could be, for the autistic person, an assistive device equally important as the hearing aid for the deaf, or the Braille typewriter for the blind.
For the usually restless autistic persons, especially those living in block of flats, in the crowded Greek towns, unable to walk around alone without the danger of being killed, the car provides the only way out of the closed surroundings of the flat which irritates every one, to the open environment of nature, which calms them down. About five years ago, partly through my efforts as Special Secretary for Special Education , the Ministry of Finance agreed to extend this tax relief to the persons with Autism and mental deficiency as well, but with one unbelievable restriction: the parents who can drive the car, because the autistic person can not, can use it only if the autistic person is in the car!!
Rule 6 lays down that "States should recognize the principle of equal primary, secondary and tertiary educational opportunities for children, youth and adults with disabilities, in integrated settings. They should ensure that the education of persons with disabilities is an integral part of the educational system. In states where education is compulsory it should be provided to girls and boys with all kinds and all levels of disabilities, including the most severe".
In Greece the primary and secondary education is compulsory for all children, but for the children with disabilities it is not, and this means that it is not compulsory for the State either.
The result of this discriminatory treatment is reflected in the last "Bulletin for Special Education" published by the Ministry of Education. According to this Bulletin, from the overall number of children with Special Education Needs, estimated between 180 000-200 000, in the school year 1993, only 14.136 were educated in 200 State and private Special Schools and in 602 Special Classes. Where are the others educated ? An unspecified number with mild deficiencies are found in ordinary schools inadequately equipped and staffed for their needs. Another unspecified number are in costly private day centres which provide daily care but not special education. Another also unspecified, but probably the largest number are at home, where the well-off parents pay some visiting teachers and the others try to be teachers themselves.
Out of these 200 Special Schools and 602 Special Classes, however, not one is for children with Autism. In the Special schools and classes for mentally deficient some autistic children without behaviour problems do attend being taught by teachers not specially trained, and that is al] the Ministry of Education offers.
There are two educational therapeutic units in the area of Athens, supported by the Ministry of Health and Welfare, the one founded by the Children's Psychiatric Hospital of Attica, and the other founded by the Mental Health Centre of Athens. Both of them provide services to a total of 35 children up to 15 years of age.
It is more than clear the fact that, within the framework of the Greek educational system, the children with physical, sensory, and intellectual disabilities or deficiencies, are treated as second class category citizens among the children of Greece for whom the Ministry of Education has done something though very little to fulfil its constitutional obligations, while the children with Autism are treated as second class citizens among the disabled children, or third class citizens among the children of Greece, for whom , up to now, the ministry has done absolutely nothing.
Rule 8 Lays down that "States are responsible for the provision of social security and income maintenance for persons with disabilities. They should ensure the provision of adequate income support to persons with disabilities who, owing to disability or disability-related factors, have temporarily lost or received a reduction in their income or have been denied employment opportunities. States should ensure that the provision of support takes into account the costs frequently incurred by persons with disabilities and their families as a result of the disability. States should also ensure the provision of income support and social security protection to individuals who undertake the care of a person with a disability".
In my country, the provision of social security and income maintenance to every category of disabled people, is very inadequate to meet the needs for a minimal proper living, and this makes them second class citizens among the non-disabled people. For the people to Autism, however, this provision, when it is provided, is so low in comparison to the provision for other people with severe or even less severe disabilities, that it makes the people with Autism second - class citizens among the disabled people. Let me support this with some facts taken from the Ministry of Health and Social Welfare which is in charge of these provisions. These figures include the latest financial increases.
Blind persons, working or being retired pensioners, in addition to their income, receive 22. 800 drachmas (with the present rate of exchange about 90 USD or 58 GBR) per month, as a disability allowance.
Blind persons employed with a university degree, in addition to their income, receive 52. 500 drachmas ( about 214 USD or 140 GBP) per month as a disability allowance.
Blind Lawyers employed or practising their profession, in addition to their income, receive 52.500 drachmas ( about 214 USD or 140 GBP) per month as a disability allowance.
Blind Lawyers being articled to a lawyer, receive 43.800 drachmas ( about 175 USD, or 115 GBP) per month as a disability allowance.
Students or school pupils, receive 25.000 drachmas (about 102 USD,or 67 GBP) per month.
Persons with paraplegia or tetraplegia insured or not insured, receive 106.760 drachmas ( about 434 USD or 284 GBP) per month as a disability allowance.
Cerebral palsied persons, up to 18 years of age, receive 38. 500 drachmas (about 157 USD or 103 GBP) as a disability allowance.
People with severe mental deficiency, if they do not have any other benefit from a state insurance fund, receive 40.500 drachmas ( about 165 USD or 108 GBP) per month as a disability allowance.
If they have up to 5 000 drachmas from another fund, receive 36.000 drachmas ( about 147 USD, or 96 GBP) per month as disability allowance.
If they have more than 5 000 from another fund, receive 26.400 drachmas (about 106 USD or 70 GBP) per month as a disability allowance.
Persons with Autism. As persons with Autism they receive nothing, because Autism is not included in the legislation as a disability. They receive 30.500 drachmas (about 124 USD, or 81 GBP) per month only if they have a diagnosis in which it is stated that they have a mental deficiency 67% or that their intelligence quotient ( I.Q) is below 30%. They do not receive even this, however, if their parents get some family allowance with their pension from a state insurance fund.
This means that in my country, until the foundation of our Society, Autism as a disability
was never in the mind of the Departments in charge and of the policy making people in the Ministry of Health and Social Welfare. It was never realized that Autism is a very peculiar, very inexplicable, and very painful disability for the autistic person, very difficult to face, very destructive and unbearable for the whole family.
Rule 15 lays down that "States have a responsibility to create the legal bases for measures to achieve the objectives of full participation and equality for persons with disabilities. National legislation, embodying the rights and obligations of citizens, should include the rights and obligations of persons with disabilities. States must ensure that organizations of persons with disabilities are involved in the development of national legislation concerning the rights of persons with disabilities, as well as in the ongoing evaluation of that legislation".
In the existing Greek legislation for education, health welfare and social security, there is some, concern for rights and obligations for all the other persons with disabilities , but the people with Autism are completely ignored by the Greek legislation. It is needless to say how many problems may appear in the every day life for disabled persons whose disability does not exist in the legislation. As I have already mentioned, the autistic persons are not even entitled to this very small maintenance and social security income and they must have a diagnosis from a centre for psychiatric health, or another authorized state diagnostic centre which usually know very little about Autism, in which diagnosis it is confirmed that they are severely mentally deficient and their intelligence quotient (I.Q) is below 30%.
The situation remains the same in spite of the fact that, in the last three years a ray of hope started breaking through with the adoption by the Greek Government and the European Union's authorities of a pilot plan for the creation of a National Network of services for Autistic People throughout the country, presented by our Society. The decision was announced by the Secretary of Welfare Mr. Panos Kouroublis in the closing session of our Conference "Searching f or Ariadne's Thread" 12th- 14th January 1995.
Since then, some preparation for its realization have taken place, but the completion of the plan will take time. Even when it is completed, though it will be a great step forward, it will be no more than a little river in the ocean of the problem.
In so far as the European Union is concerned, this discriminatory treatment which the people with Autism suffer in comparison to other disabled people, is detected in the programmes of the Union for the people with Special Needs which, in reality, in one or another way, they have as their aim the professional training and the integration of the disabled people into the labour market, and consequently, they are addressed to the persons with physical or sensory disability, or to the persons with mild mental deficiency.
Let us look for a moment at the HORIZON Programme and the Programme of Social Exclusion of the Labour Market.
The HORIZON Programme, among the disabled persons to whom it is addressed, includes the autistic as well, and so at a first glance, it appears that an equality of opportunities exists. When one looks at the analysis of the actions, however, it is easy to find out that in substance, this equality concerns those disabled persons who are able after a proper professional training to work in a more or less normal environment, or at least to do a productive job in a sheltered workshop. The question which needs a realistic answer, however is the following:
How many of the persons with Autism, have this ability, especially of the autistic persons who are living in those countries of the European Union where there is not yet the diagnosis, the assessment and the proper education which the autistic persons need from an early age, in order to be able to follow any kind of professional training and professional activity?
The picture becomes more clear if we look at the Programme for the Social Exclusion of the Labour market and especially at the Section 1, Integration and Reintegration in the Labour Market of Persons with Special Needs. Defined as persons with Special Needs are those persons with physical, sensory or mental disabilities. There is no mention of the autistic persons, with the result that the people in charge of the programme in the Ministry of Labour think that there is no mention because they are not able to participate in such a programme, and the people in charge in the Ministry of Health and Welfare think that the autistic persons are included in the category of persons with severe mental deficiency for which, in the Technical Report of the programme it is stated:
"For the persons with severe mental deficiency the training can not be expanded beyond the level of developing their basic skills and reinforcing of their ability to have an independent life as much as possible while their professional occupation must be directed to activities that can be done with repeated movements"
In the same Technical Report, however, it is stated that Step 1 of the training programme is preparatory, Step 2 aims at the professional training, and Step 3 aims at the placing of the trained persons in the labour market".
Needless to say that for autistic persons, step 1 could be very useful, step 2 could be reached by very few , and step 3 by extremely few , if any.
I have no time to refer in more details which will show that the Programmes of the European Union are in fact directed to those People of Special Needs, who have the ability to be trained and thereafter placed in the labour market. This policy, which favours the most able of the disabled persons, turns out to be a policy which treats the most severely disabled persons, among which the persons with Autism are, as second class citizens among the People with Special Needs or third class citizens among the people as a whole.
Coming back to my country I would like to mention that this discriminatory treatment is cultivated, somehow even from the movement of the people with Special Needs which is dominated by the organisations of the most able disabled persons. Let me give you one example. The Executive Council of the National Confederation of People with Special Needs, which unites the organisations of the disabled people and of the parents of the disabled people as well, issued three years ago a Declaration for the International Day of the Disabled People the first article of which states that:
"Disability does not mean inability, and all people have the right to differentiality"
Because this article does not express the most severely disabled persons whose disability means inability, among which are the autistic, I attempted persistently to convince the Council to change it as follows:
"Disability does not always mean inability. Inability does not mean loss of the right to a dignified life"
With this change the article expresses the rights of all groups of disabled persons, but it has not been accepted up to now. And this is happening because the Declaration has been drafted by disabled persons who have the ability, as it is stated in another article, to claim "a full participation in the economical and social development of the Country and of the European Union as well". Such participation is not possible for the autistic people. It is possible for the parents of the autistic persons but, their disability, created by the disability of their children, has never been recognized by any one.
My first question, in conclusion, is: Are we the Autistic People and their families second-class citizens among the people with Special Needs or in fact third class among the ordinary people?
And if it is so, then my second question is: What are we going to do in order to ensure that the European Union , as well as the member states, adopts a welfare policy as well as a policy of training disabled people for the labour market? And finally, what are we going to do as a United European Movement, in order to ensure true equalization of rights for our autistic children and for ourselves?