This paper compares the life of mentally retarded people who have been placed outside an institution with the institutional environment. The thesis tries to find answers to the questions of adaptation of the mentally handicapped in the society, also to map the readiness of the society to accept the mentally handicapped.

The aim of this thesis is to find out whether the mentally challenged should be integrated into the society. The main focus will be on mentally disabled people who are currently living outside the institution as ordinary people in the city of Slany and other people's opinions about them.

The research question is therefore: Is it beneficial for the mentally disabled to live outside of institutional care? And what do other people think about it?

Milan Cháb in his book „Life without Institutions“ highlights the problem of power. If a person is part of an institution, he has power over those below him in the hierarchy. There is a belief about „stone“ institutions that they are impersonal and unkind, but Cháb sees the problem not in these institutions, but in the media coverage they generate. All agree that such an institution (institute) is inappropriate. So something will be built where, according to popular opinion, it will be better, but the power over the people there will be even greater. In terms of power, then, the new institutions do not solve the root of the problem. Usually someone will then come to the front and show the world how it is „supposed to be done“. First he needs to employ someone, so he makes a workshop. Then he needs a new extra education, so he builds a school and suddenly he has a ghetto. But why do we have to build our own school system? Why can't we change the established system to educate those who would otherwise be isolated. The same is true of employment. The Chab considers sheltered workshops almost unnecessary. [3]

There is no overall guide; each institution has its individual destiny, its individual conditions, and seeks an individual path. The Cháb sees the option of deinstitutionalization as the only right way. He does not want to build new, better institutions, but rather to „cut down“ the old ones. A person in an institution should slowly return to society, the last step of his journey is taking responsibility for himself. Which he may or may not accept. An institution, therefore, need not take its classical form, but the form of a kind of organization that performs services for the mentally handicapped. Which the disabled person himself chooses, or his parents choose. The services are to be flexible, individually tailored to the specific needs of the individual, using the individual's own resources. New options and approaches allow even people with the most urgent needs to live in their own homes. An approach that can be called „supported living“ gives people what they want, what they need. It costs less than residential care while providing an infinitely higher quality of life. [3]

Services should be offered so that every citizen

- can live in a safe environment,

- to be able to live with their family in their own home in the community,

- have choices, present and future, that will affect their lives, including the type of services provided,

- have the opportunity to maintain meaningful relationships with family members, friends and others

- have the opportunity to attend local schools, have a job and participate in activities based on individual talents, interests and choices

- have the opportunity to participate in any activity in the community of his/her choice (church, clubs, societies, etc.)

- to have access to the same services as all other citizens to meet their daily needs [3].

According to Milan Chába, the current institutions do not allow any of this.

Exactly two years ago (2007) the Central Bohemian Region started a unique project. People with disabilities, for decades confined behind the walls of institutions, were given the chance to live according to their own ideas in mainstream society. Under the leadership of former governor Petr Bendel (ODS), the region was the first in the Czech Republic to decide to completely abolish social care institutions and allow clients to live according to their wishes. People with disabilities began to learn independence, learn the value of money, go to work and prepare for independent life in sheltered housing. [1]

After his departure, a new governor, David Rath (ČSSD), came in and disagrees with the end of institutions in the Czech Republic. According to him, the project should look like this. On or near the premises of the institution, there will be a small apartment building where everyone will have their own studio apartment, because it is important for these people to be where they are used to, or where they grew up.

He says most people are not at a level to live independently - they don't know how to look after themselves, they don't know the risks in society, they don't know the value of money, they are mentally weaker and living in society could put them at terrible risk [1].

According to Ombudsman Otakar Motejl, facilities for the mentally disabled should not invest in large-capacity facilities in remote locations, but in small workplaces directly in towns and villages. If clients live on the outskirts of towns or in isolated places, this can deepen their isolation and social exclusion. There is also a need to increase the number of staff, especially non-medical staff, to enable clients to live in facilities in a similar way to healthy people. Clients would be better off living in mainstream housing, in place of small workplaces that can mimic a natural home environment. The clients of the facility should have a similar regimen as healthy people. This means having the day divided into three spheres - living and sleeping, the sphere where people go to work, and the sphere where they spend their leisure time. They should also rotate their environment and, like healthy people, rotate their bedroom, living room and outdoor space. [9]

When ideas about racial purity changed the way people with disabilities were viewed in the 1920s, it also brought a decline in the charitable approach to caring for them. An institutional system developed and people with intellectual disabilities were increasingly isolated from the rest of society. Involuntary sterilisation was widespread throughout the Western world and, during the Nazi regime, large numbers of mentally disabled children, adolescents and adults were murdered in Germany. No other group of people was subjected to such an intrusion on their integrity and such prejudicial abuse as children and adults with mental disabilities. Although human rights include people with disabilities, it is still considered acceptable to deny them access to an open society and to confine them in institutions. Today, institutions are the last vestige of the collective ideologies of the past that gave society the right and power to separate some people from the rest of the community and to limit their freedom, influence and living conditions. It is proven that people with disabilities do not need to live in institutions, no matter how severe their disability. And living in an open society also leads to a greater degree of independence and personal development for the individual. [10]

Generally, the negative impacts are less severe if the institution is modern and rather smaller. But even if the institution is small, there is a clear difference when compared to life in ordinary society. The trauma of being involuntarily separated from one's parents, friends and the familiar surroundings of home leads to a deep conviction of one's own unwantedness and helplessness, of being a thing rather than a unique human being. The very environment of an institution creates other handicaps that mark a person for life. In particular, they disrupt the emotional and social development of the individual. Emotional maturity does not depend on the degree of disability. A person may be relatively intelligent but emotionally immature, while someone with severe intellectual disabilities may be quite mature emotionally. The fact that a person with a severe intellectual disability has difficulty expressing his or her feelings does not preclude a developed emotional life. If a person is confined in a miserable and single-sex environment and suffers from a lack of personal life, autonomy and regard for his personal integrity, this will interfere with the development of his normal emotional life. [10]

In the Czech Republic, there are currently about 1,200,000 citizens with disabilities, and of these, about 300,000 are mentally disabled. The barriers in our environment are twofold - physical and psychological. Physical barriers are real limitations in the environment in which we live and in which we move every day. They make it difficult or impossible for people with disabilities to move around in their environment. Psychological barriers are both in able-bodied people and in the disabled themselves. The healthy person often avoids the disabled person. The reasons may be different. There are people who do not know how to communicate with the disabled person, how to help him/her. Some have a kind of strange guilt that they are healthy and the other is more or less helpless. [4]

This paper uses information based on literature and internet sources. One of the qualitative research methods is used to get answers to the research question, it is a guided interview. A personal interview seems to be the best option for this group of respondents, where certain categories of questions are set, which can be further expanded during the interview. In the practical part, these answers are elaborated and the overall summary of the data obtained is concluded.

In addition, interviews of other people who have given us their views on this issue are used. As this is a highly debated issue, there are already several internet discussions. Some opinions from these are also used here. We try to include a generational perspective in the interviews. We are trying to show the diversity of opinions at different ages.

Given the mental state of the interviewees, the interview is problematic. Some of the mentally disabled either do not speak at all or utter unintelligible words. Another problem is that they do not know how to count, nor do they know the value of money, so they cannot answer questions about finances. They cannot shop or cook as they cannot recognise the ingredients. They are therefore totally dependent on the help of other people.

Mental retardation refers to a total lack of personality development, with significant intellectual impairment. The term mental retardation (oligophrenia) translates as delayed intellectual development. The term was adopted from international medical nomenclature as proposed by the WHO in 1959 [5].

Several scales are used to define the mentally retarded, e.g. the Wechsler Adult Scale, the L. M. Terman and M. A. Merrill Intelligence Scale. [5]

According to the WHO classification and the International Classification of Mental Disorders, oligophrenia has been divided into the following grades, according to the IQ coefficient:

- Mild mental retardation - IQ 68-85

- Mild feeblemindedness - stupidity IQ 52 - 67

- Moderate feeblemindedness - imbecility IQ 36 - 51

- Severe feeblemindedness - simple idiocy IQ 20 - 35

- Severe feeblemindedness - severe idiocy IQ below 20 [5].

Mental retardation affects 3-4% of the population. Mental retardation is ten times more common than cerebral palsy and affects twenty-five times more people than blindness. [6]

Despite various views that the mentally retarded should not be segregated from the world into institutions, their displacement in ordinary civic life often occurs because of their difficulty in participating in life and their psychological inhibitions to accept these individuals into the social group. This unacceptability, stems from the psychological law of singling out the outsiders of the group, especially the individuals who are abnormal and therefore disabled in some way (even in the case of above-average individuals). The mildly mentally retarded may then experience feelings of inferiority, the need to compensate for their deficiencies with inappropriate activities, the need to seek out equals, the need to excel in some activity (e.g. manual work). These compensatory tendencies can be socially positive or negative[5].

Most children with milder forms of mental retardation tend to be placed in special schools. The purpose of special schools is to prepare pupils as much as possible for independent practical life. The special school should help its pupils to overcome deficiencies in skills, qualities and motivation, to strengthen their ability to make social contacts, to teach them to regulate affective behaviour, self-management and self-control, and to unlearn inappropriate behaviour. Yet, in our current culture, special school is seen as something inferior. Understandably, in this atmosphere, students attending special school feel inferior and ashamed of their school. The profession of special school teacher is also undervalued. It is clear that these circumstances contribute negatively to the efforts to socialise children with mental retardation into mainstream society. [8]

The special school should also cooperate with other educational institutions that care for its pupils. These include, in particular, various types of social welfare institutions that offer children both education and leisure opportunities. They try to motivate children to engage in creative activities, e.g. by painting together, in drama groups, etc. Sports activities and participation in sporting events are also important, where children not only have the opportunity to change their environment and play sport, but also learn to be independent and do things for themselves. This type of care for people with mental retardation is followed by a sheltered housing and employment project. Young adults with mental retardation live in a shared flat with assistants and learn to take a reasonable level of responsibility for running the household. [8]

Currently, there are fully integrated schools where children are enrolled only by residence. As a result, the composition of the classes should correspond exactly to the percentage of disabled people in the locality. Each child in such a class has his or her own individual curriculum, as it is not possible to establish a uniform curriculum for the whole class. For both able-bodied and disabled children, the integrated school offers, above all, the development of social skills and social awareness. In our country, such schools exist only exceptionally. There is more experience with the full integration of disabled children at nursery school level, certainly because certain behaviours that deviate from the norm are quite common in the majority of the child population at this age. We can say that the optimal (segregated or integrated) school probably does not exist at present[8].

The problem of employment of the mentally retarded involves two aspects. Economic and ethical. From the economic point of view, it is possible to use the mentally retarded for work and thus reduce the costs devoted to them. From an ethical point of view, there is a situation where the experience of the disabled must be taken into account. The disabled can gain a sense of need and usefulness through work. In the past, there have been labour abuses of the disabled. For ethical reasons, one has to settle for less productivity at work[5]. If the mentally retarded are properly educated and supported, it is possible to prepare them for employment and independent everyday life[6].

The Ledce Social Institute came up with a project to move the mentally retarded there in small groups to family houses in the Central Bohemia region. This project is intended to serve as a model for other institutes and to provide the disabled people with so-called protected housing.

Ledce is an ancient institution that provided its services for decades in a baroque castle and house from the early twentieth century. The Department of Social Affairs of the previous administration of the Central Bohemian Region considered that the conditions in the castle were unsuitable for residence and supported the concept of finding another type of housing for the clients. According to this planned concept, fifty clients were moved to Slaný and its surroundings to rented houses or apartments. Forty-five clients remained in the house next door to the institution, but structural engineers found damage to the supporting beams. Therefore, these severely disabled people were also moved to a new suitable space. With the consent of the council, the Villa Praga in Slany was selected. Both the management facilities and the severely disabled clients were moved to this villa, where they still receive 24-hour care[7].

Our work focuses on a six-member group of mildly mentally disabled people who now live in Na Vinici Street in Slane. This group consists of two women and four men. The house is newly renovated and has three floors. The ground floor has all the facilities (e.g. laundry, boiler room, cellar…), the first floor has the living area (e.g. living room, kitchen…) and the second floor has the bedrooms. The clients are placed in the bedrooms two by two. This is a huge change from the institution where they were six to a room.

The interview took place in their current family home and they were asked the following sets of questions:

Daily routine; Cooking, laundry, cleaning; Shopping; How they divide their work; What they can't do; How often they go out (supervised or unsupervised); Whether they work; What they have to pay for now and before, what they spend money on; Pets; Guardianship - legal independence; Do they need help with anything or are they mostly independent; How other people react to them.

The beginning of the interview was a bit confusing as there had been an argument in the group the day before. One client was still offended and refused to participate in the group interview. This illustrates that there are rifts here as well. However, the others were helpful and kind. One member of the group took the floor and was able to talk the whole day. The problem was that he only „hummed“ and did not make any decipherable words, so the assistant had to „translate“.

The assistant is present from 7am to 7pm. There are 3 assistants in rotation during the week. This is also the case in the other sheltered homes. This form of housing is more demanding on the staff. There were 3 attendants present in the home per day for 90 people. This already shows the level of care. According to the clients themselves, nobody paid any attention to them in the home. Now they help them with all activities and spend the whole day with them. He has to write reports on all the events that happened during the day and prepares a schedule for each day. This includes a schedule of services for cleaning, cooking, etc.

The clients do not have a very demanding daily schedule. They get up in the morning between 6 and 7 am and make breakfast. When the assistant arrives, they start to clean their rooms and do the jobs specified in the schedule (e.g. one cleans the living room, the other the kitchen…). Lunch is cooked by the assistant with their help (peeling onions, potatoes, preparing side dishes…). After lunch they go for a favourite walk or watch TV. Some also do chores. As early as 5 p.m. the assistant starts preparing them for bed. He has to bathe and shave them all. Then they go to bed. Some of them have a TV in their room, so they watch it sometimes.

The surprise was that they can't do most of the tasks themselves. None of them could cook a better lunch on their own. This is due to the fact that nobody taught them in the institute and they also have problems with weighing the ingredients and recognising them. An example is a mentally handicapped couple who were able to become independent. But they had to deal with common problems that we don't perceive. When they went to buy a dumpling, they couldn't tell which one was a bun and which one was a potato.5 They also can't manage hygiene on their own; an assistant has to shave them, bathe them, and make sure they brush their teeth well. The only thing they do themselves is cleaning. The big positive is the mutual help, the more able helping the less able. One client has difficulty walking and uses a wheelchair to get to town. The others are always happy to help him and push him everywhere.

But despite the unpretentiousness of the daily program, it is a big change from the institute. As they themselves attest, in the institute it was just food-room-food-room…. Their food was cooked in the dining room and brought to their room, so they had almost nothing to do. Even walks were occasional. Ledce is a very small village and the clients had nothing to do and nowhere to go. The lack of caregivers also didn't allow for much in the way of larger group events. Clients complained several times during the interview about the caregivers' lack of interest. They said they were rude to them and did not help them much. But even now they are facing this problem. As the current assistant also points out, her colleague is not doing her job as she should. She doesn't help the clients much and „works her shift“ in front of the TV. There was even a bigger problem with the previous assistant. She was stealing from her clients and treating them in an immoral way. You can still hear the outrage from both the clients and the current assistant.

Some clients are engaged in domestic work. They presented embroidered blankets, painted pictures, batiked T-shirts and wicker baskets. In the past, they have arranged a course for them to make wicker products. Their work turned out well. They sold most of the products and raised some money. These products were indistinguishable from the professional ones. Some of these activities took place in the institute but were very limited. Now it is an advantage that they can go to the city to buy the necessary aids. But most of the clients are left with institutional habits and just lie around all day.

Cultural and social activities are also better in Slane. Clients regularly attend local events such as concerts in the square, themed events (St. Nicholas Day, etc.). In the institution they did not have this programme because they would have to arrange a bus to take them somewhere for entertainment. The clients still visit each other with other groups spread around Slane and take trips together. Some go to church alone for mass.

Shopping for food, clothes and other things is done for them by the assistant or the clients go with him. Buying clothes is so much better. In the home, the caregivers bought clothes on their own at their discretion. Now the client can buy whatever he wants and can try on everything in the store. The assistant tries to teach them common activities whether it is shopping, hygiene or signing. Most cannot read or write and have great difficulty.

Except for one woman, they are all incapacitated. Those who have no family fall under the municipal authority of Ledce. They therefore have limited scope, especially financially. They have a joint account which is handled by an assistant. Purchases, rent and bills are paid from this common fund, even Christmas presents. Each month they receive 150 CZK/person, which they are free to spend as they wish. This system is the same as in the institute. They receive a disability pension and a care allowance. Their current cost of living is not much different from that of an institution. The cost of running the Ledec Castle was huge, but it was shared by a few more tenants. Now they have less cost, but six share it. In proportion, it works out the same. However, the cost to the state is greater because they have to pay more qualified assistants.

Clients can also get a pet if the assistant deems they can handle it. So they took a dog from a shelter. The problem arose when a client took him in. But the group made a concession and let her keep the dog. Under the supervision of an assistant, she takes care of him and walks him several times a day. This was not possible in the institution.

They all answer that they are happy now and do not want to go back. Even their families agree with this move. But they have been met with negative reactions from the citizens of Slany. They have had several clashes with neighbours over noise, but after an agreement everything was settled. It is clear to them that they have to have a certain tolerance with the affected people. As the disabled themselves say, they have the biggest problems with the Roma minority. They verbally attack them. But most people have got used to it and even help them with their problems. For example, their neighbour helps them with the boiler, which they have not yet learned to use. After experiencing these disabled people, we believe they deserve a free life, even if they need a lot of help. It will teach society some moral behavior and provide a new perspective on life.

A number of people were interviewed and were divided by generation into a Young group (18 to 29 years old), a Parents group (30 to 49 years old) and a Grandparents group (50 and above). In each group, 10 people were approached to express their views on disability, who were placed in groups in houses and apartments in the Central Bohemia region.

The Youth group responded mostly positively. In their opinion, the disabled deserve to live on their own terms and try to become a little more independent, they can also move in the company of people and adapt to the outside world. The only concern they had was that people with more severe disabilities should not be isolated and be a danger to the environment and especially to themselves.

The Parents group was a little more sceptical. In their opinion, there were various activities in the institutions that made life more interesting for the disabled and taught them different skills. One of the interviewees also had an experience of his disabled brother being in an institution, but because the building was in a state of disrepair they had to move him and the others. With the change of environment, his brother's psychological condition was said to have deteriorated and commuting to see him was also more difficult. The group was particularly concerned about the psychological state of those affected. In the institution, they could have many others like themselves around them and also friends. They would only place those with minor disabilities in separate apartments who could tolerate the rude insinuations of those around them and yet it would not drive them into depression.

The Grandparents group liked this idea very much. Integrating the disabled into mainstream life instead of keeping them in an institution seemed right to them. Some likened it to when they were disabled, that they would also prefer to stay in their own homes and have an assistant if necessary, rather than spend the rest of their lives in an old people's home. When asked if they would mind putting the disabled in a block of flats with them, they answered mostly in the affirmative. They thought that the managers of the institution had to consider which of the disabled people to place in flats and which to move to other institutions. They also said that a group of disabled people was better than a young group of rude people or various minorities.

There has also been a lot of discussion on the internet on this topic and it is worth listing some of the opinions in the paper. There was one controversy in particular that was about the financial side of things. Many people were enthusiastic about the idea and said that these people also deserved to live a normal life, but their opponents said that it costs the state a lot of money and that this money should be better spent on families with children who will pay the state back through their work. However, supporters of housing for the disabled disagreed because, in their view, a healthy family can earn its own living, whereas sick people need our help because they would not be able to support themselves. Another opinion was that these people were unpredictable and that surely no one would be happy to have them as neighbours because they could not know when a situation would arise, for example, when they would set fire to the house with a cigarette or attack their flatmates. However, the case of someone setting fire to a house from a cigarette butt has happened several times and in all cases it involved normal people.

The treatment of this topic was very interesting because most people have some idea of what is good for the mentally disabled and how to behave to help them and do everything we can to make them feel good. But is what we think is really the best thing for them? What do the mentally disabled themselves want? Our group has had the opportunity to find out these views, which is why we are leaning towards supporting the idea that the mentally disabled should be able to live outside of an institution. We were especially convinced by the interviews with the disabled themselves and their assistant, who told us about what life in the institution was like and how many extra activities the disabled can do now. The views that these people can be dangerous are certainly true, but severely disabled people are few and their diagnosis would not allow such mentally disabled people to be allowed to live independently outside the institution. Of course, it may happen that there is suddenly a quarrel or an outburst of aggression, but these cases are not frequent and, more importantly, they can happen to any healthy person.

The group of parents who did not see the situation optimistically were also right in a way, but their reasons were mainly due to lack of awareness of the real situation.

Mentally handicapped people should have the right to decide for themselves whether to live in institutions or separately in groups in real life. However, it is also up to professionals to determine which mentally disabled people can be offered this option. This housing option is no more costly than running an institution itself, but it is also about social sensitivity with this population group, and this should be developed.

[1] BÁRTOVÁ, E. Konec života na svobodě : Rath chce mít lidi v ústavech [The end of a life of freedom : Rath wants to keep people in institutions] [online]. 1999-2009 [cit. 2009-12-07]. Dostupný z WWW: http://aktualne.centrum.cz/domaci/spolecnost/clanek.phtml?id=633597

[2] BÁRTOVÁ, E. Poprvé v životě žili normálně. Zkouška vyšla. [For the first time in their lives, they lived normally. The test was passed.] Server aktuálně.cz [online]. c2007 [cit. 2009-12-04]. Dostupný z WWW: <http://aktualne.centrum.cz/clanek.phtml?id=413397>

[3] CHÁB, M. Svět bez ústavů. [A world without institutes.] Praha: OBČANSKÉ ZDRUŽENÍ QUIP, 2004. 83 s.

[4] IVANOVOVÁ, S. Integrace zdravotně postižených osob do společnosti. [Integration of disabled people into society] [online]. 2008 [cit. 2009-12-12]. Dostupný z WWW:< http://www.vkol.cz/cs/dokumenty/referaty-a-soupisy--nejen--pracovniku-vkol/prehled-referatu/clanek/integrace-zdravotne-postizenych-osob-do-spolecnosti/>

[5] LANGER, S. Mentální retardace. [Mental retardation]. Hradec Králové : KOTVA, 1990. 251 s.

[6] PERGLER, I. Co je to mentální retardace? [What is mental retardation?] [online]. c2002 [cit. 2009-11-02]. Dostupný z WWW: <http://www.dobromysl.cz/scripts/detail.php?id=32>.

[7] ROGL, V. Ředitelka, která dala handicapovaným lidem na Slánsku naději, dostala padáka. [The director who gave disabled people in Slánsko hope was fired.] Slánské listy [online]. c2009 [cit. 2009-12-03]. Dostupný z WWW: <http://www.slanskelisty.cz/sl/zpravodajstvi/210609reditelka.php>.

[8] Socializace mentálně retardovaných [Socialization of the mentally retarded] [online]. c2008 [cit. 2009-11-07]. Dostupný z WWW: <http://referaty-seminarky.cz/socializace-mentalne-retardovanych/>.

[9] Ústavy pro mentálně postižené by neměly stát na samotách [Institutions for the mentally handicapped should not stand alone] [online]. 2009 [cit. 2009-12-07]. Dostupný z WWW: http://www.ceskenoviny.cz/zpravy/motejl-ustavy-pro-mentalne-postizene-by-nemely-stat-na-samotach/402545

[10] Zavřete ústavy [online]. 2002-2009 [cit. 2009-12-12]. Dostupný z WWW: http://www.dobromysl.cz/scripts/detail.php?id=1039

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