DESCRIPTORS: choice, adults with disabilities, Kurchatov Rehabilitation center, semi-independent residential setting.
SYNOPSIS: The authors share their experiences, insights, and conclusions developed during the establishment of two semi-independent residences for “disabled” young adults in Kurchatov, Russia.

The Russian Federation ratified the United Nations Convention on the Rights of Individuals with Disabilities on the 3rd of March, 2012. (The RF had signed the accord in 2008.) This means that thousands of people now have the opportunity not only to learn about their own rights but to enjoy the “right of choice” in making their own decisions regarding employment; education; medical, social, corrective, and developmental services; and, very importantly, where they will reside. In reality, up to now, social services did not offer people with special needs very many options in their way of life.

From birth, Russian government services regarding the welfare of each individual in the country are clearly defined and regulated. A concentration of institutions has been established to safeguard the development, employment, and residence of a citizen in accordance with federal legislation. Unfortunately, the amount of available services and their variety differ greatly when one closely examines the following two categories: an ordinary person; a person classified as an “invalid” or “disabled.” For example, a healthy child according to his/her place of residence, has a great number of educational options available in the areas of pre-school, kindergarten, and regular school (Russian schools consist of grades 1-11,) as well as institutions for supplementary education. There are state (public) and private, technical, professional, and educational institutions of diverse levels and offerings available. In all of these institutions, a person has the opportunity to pick up experience in developing relationships with other people, to be one among many, to travel a path of self-direction, and eventually, to choose from among a variety of life-direction opportunities.

A child classified as an “invalid” or “disabled” is in the exact opposite position. The concentration of services in special institutions does not provide the necessary conditions for implementing educational inclusion since all the students are “special.” Under these conditions, “disabled” children assimilate experience from their “disabled” peers with all of the peculiarities that are present. Later, in moments of social interaction with ordinary children, the “disabled” children are not capable of finding their way amid more complex connections and multi-varietal perspectives. In the absence of what can be called ordinary social experiences, they do not have the ability to make beneficial decisions through utilization of the tools of self-direction.

We ran into these kinds of problems at our Rehabilitation center in the city of Kurchatov which is located in the Kursk Region of Russia some 340 miles south of Moscow, we ran straight into these kinds of problems after we received a request to provide services in the homes of families with adult “disabled” persons. At the outset, parents suggested that we create a semi-permanent or part-time residence where their children could learn to make and live with the consequences of their own choices and decisions in an atmosphere of independence.

Our rehabilitation center had previously created occupational training workshops of a type where during “work” from 8:00 am to 5:00 pm, our students were provided with occupational training activities within a complex support structure. In an attempt to maximize our real-life employment training efforts, we took a close look at the various options available to us if we were to create a semi-independent residential setting for some of our disabled young adults with psycho-neurological illnesses. We took into consideration the fact that all their previous life experiences had been in family home where their parents or close relatives played leading roles. Within this type of setting, the disabled young adults did not have an opportunity of developing mechanisms for self-direction. Subsequently, we proposed the creation of “student apartments” in which we would be able to define a “curriculum” of life competencies and structure them in concrete and beneficial activities that would require each of our students to participate in a daily series of “real life situations” and make decisions and choices that would affect “apartment life” for the group. It was our assumption and our hope that their immersion in this process would eventually develop their life skills and expand their, formerly, limited lives.

Buying in to this goal, the Kurchatov City non-profit organization - a parents’ club known as “Assistance” acquired two four-room apartments located in a residential apartment building near our rehabilitation center. This very natural and ordinary setting became our “proving ground” for the inculcation of decision-making skills during the simple, everyday situations in which the students residing in the apartments were “forced” to interact daily with others. Their range of experiences would be stretched beyond the bounds of their loving and sheltering family members.  Each of our young adults now had to interact with their apartment mates while planning menus, preparing dinner, and organizing leisure activities. They also had to deal with diverse citizens of Kurchatov while buying groceries in a store, going to the theater, or while on walks and outings.

As we anticipated, the minimal, life-skills’ competencies possessed by our students did not allow them to make the most of the independent (but supported) living conditions in the apartments. While in their family homes, surrounded by their relatives, our young people found themselves in situations of constant guardianship and attention. They were completely dependent on the decisions of those around them. As a result, at 30-35 years of age, they were living below their age-norm level in such areas as orientation toward time, planning financial expenses, and in investigating the causal connections in their life. Once they took up residence in the “student apartments,” the recurring necessity to make their own decisions regarding the minutia of daily life overwhelmed and exhausted them worsening their psycho-emotional conditions.

Let’s take a look at some specific examples emanating from our analysis of the real-life situations our students faced in their apartments.

One young man of 31 finished Form VIII of a special education school and during the course of six years seemed to handle the planned activities of our occupational training workshop successfully. He followed the schedule and carried out a great number of standard functions. As one of our leading, prospective candidates for the semi-independent residence program, we proposed to him that he take part in the experiment. We reassured him that there would be “passive” support specialists in each of the two apartments who would render help with planning or carrying out household affairs but only in the case of an emergency or if help were requested by a student resident. So, he joined the project, but it soon became evident to us that this young man could not tell time and would be incapable of clearly and precisely planning activities. We were soon to realize that his deficiencies would create considerable difficulties for the residence project’s planned budget.

Because he could not tell time, he began to be late to work. At work, he was clearly disturbed. In the residence, he did not know what was on the grocery list nor the size or amount of the groceries which he was supposed to buy each day, nor did he participate in discussions about the grocery money available for the week or the month. His solution to the financial resources problem was to economize. He decided that tea didn’t need sugar and tap water could replace bottled water which needed to be bought at a store. Hunger could be satisfied by unsalted “kasha” porridge left over from dinner the day before.

He began to demonstrate an increase in nervous excitability which appeared during his selection of priorities in his daily decisions. Soon, questions were being raised about his interpersonal relationships and the success of his work activities. In subsequent discussion with his parents, it was revealed that in the past, they had noted their son’s difficulties in planning activities. Once they had determined the cause of his problem, they tried to complete jobs for him without his noticing. In doing this they were taking on themselves his responsibilities and taking away from him this important part of a young person’s life. Over time they established a family process of complete and constant control of his activities. Despite the potential for growth opportunities in a family setting, they failed to create any form of practical training or instruction for him by utilizing various, daily-life situations through which, over time, he might have developed independence in his decision-making. Instead of teaching him to tell time, his parents hid this inability and instructed him to look around and do what everyone else was doing. Similar instructions from this family were devised for compensating in other situations, but outside the home, his lack of social development weighed heavily on his quality of life and made him a poor candidate for independent (supported) living in our “student apartments.”

Other similar examples allowed us to form the hypothesis that age plays a considerable role in the successful achievement of positive results in developing independence.  The younger the “disabled person” is when independence training is begun, the more oriented that person is toward achieving positive results and is more flexible in making decisions. For an older person, it is far more difficult to emerge from a life-situation of dependence on parents and family members if he/she has lived in it for the greater part of life.

We had a pessimistic, 51 years old adult with a lack of confidence apply to take part in our independent (supported) residence. He had been trained and educated in a special education boarding school. The initiative actually emanated from his parents who saw the real necessity for their son to change his way of life and develop greater independence. For more than 30 years, he had lived with his parents much like the young fellow in the previous case that we described. His parents had constantly planned and controlled his activities using various inducements to motivate him toward carrying out petty chores. He had neither responsibility nor experience in preparing his own meals, laundering his things, planning his time, or tidying up his room. He had a complete absence of life skills. As a result, he formed a stereotypically comfortable dependency on his relatives who did everything for him. They were all incapable of destroying this dangerous cycle of dependency and forming a new and better situation. For someone like this, after his family has gone, the prospect of residence in an insulated, psycho-neurological residential institution seems the better option for the reason that in such a place, instead of his having to start to make decisions and begin to carry out his own responsibilities at such an advanced age, the institution’s ancillary staff will do it.

Curiously enough, we discovered a significant gender gap in the ability to make decisions among the participants of our special group. The young women seem to have considerably more developed self-direction mechanisms than the young men. In our opinion, this is caused by a family education model in which women grow into the role of the “mistress of the household” taking charge of the domestic business of family life. The man in the family, as “head of the household,” rests after the labors of his outside job. Inevitably, this structure becomes a real model wherein girls, as future household mistresses get a greater opportunity to exercise the mechanics of decision-making while acquiring experience in the ordinary ins and outs of family life. Our overall assessment was that our young women appeared much more adapted to the social environment of their surroundings.

Young men in an ordinary family, as a rule, are on a level of equality with their relatives and take part in the serious decision making of the family. By doing this, they get experience in the application of the mechanics of self-direction that in future years will serve them well as a base for the development of the skills needed to make deliberate choices and conscious decisions in other socially significant situations. Young “disabled” men living close to people in a family setting are seldom attracted to a discussion of family business. They appear to imitate the most moderate and easily understood aspects of the masculine role in the family, that is, “to rest after a difficult day.” As a consequence, they adopt a passive way of life. There is an absence of purposeful interest regarding their opportunities, possibilities, and resources. This becomes a significant obstacle in the formation of the necessary level of skills for successful self-direction.

We are, therefore, able to make the following assumption that, at the present moment, “disabled persons are insufficiently trained to make decisions in their lives. What is required and needs to be implemented in the shortest time possible is the establishment of a program of social work that would train families how to educate their disabled children by supplying them with practical decision-making opportunities many times during each day so that eventually this practice will strengthen their confidence and sharpen their decision making and self-direction skills. Only if this is done will those children be able truly to exercise their “right as a human being to have a choice.”