Designing & Creating an Environment for Angelman Children
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Juan J. Palomares - Spanish Angelman Syndrome Association, Madrid, Spain
0. Introduction
My name is Juan J. Palamares. María, my wife, and I, are Elena's parents. Elena, the second of our four children, is a sweet 16 year-old teenager who has her singularities like each of her three siblings, and which in her case is called Angelman Syndrome. When she was 6 months old, we realized that something wasn't right in her development and the doctors diagnosed her with severe mental backwardness of unknown origin. We thought our world was falling apart. The doctors didn't help to lift up our spirits, just the opposite, drawing a very black future; much blacker than reality has so far shown. Fortunately we didn't resign ourselves to their expectations and today Elena has a high degree of autonomy from the physical point of view, and we are trying to achieve the same level from an intellectual point of view.
Throughout the presentation we are going to explain our experience in creating an educational and social environment for our daughter to propitiate that her way through this life is the most rewarding for her.
Lastly, in this introduction, I want to refer to the moment when we were faced with the situation that we would have to create that environment for our daughter. This was when the difference in Elena's intellectual development and the rest of the children of her age meant that the head of the school where she was, in integration, told us that Elena could not continue in the school. At that moment we began to look at special education schools and they were so depressing, both in terms of facilities as well as organization, and we decided to look for our own solution.
1.0 Thoughts About Different Perceptions of Reality
Next I will make some reflections on the form of perceiving the world around us, and, obviously, my own particular vision is included. These reflections must serve as a starting point to configure and design the environment we want for our daughter.
If we look at our surroundings, we see that the world is segmented by different approaches; important cultures exist with their own specific ways of understanding and organizing life. We can see the great differences that there are between the Oriental and Western cultures, the Islamic and the Christian cultures, or between a society of free market economy and a society of planned economy, depending on whether we take segmentation approaches so simple as geographical localization, religion or the political organization.
A person that is adapted to living reality with a western viewpoint will be uncomfortable and won't understand certain behaviors if, suddenly, he has to live in an oriental society for example. The same thing would occur, probably, if we apply another approach such as religion, etc.
All of us here are living, maybe unconsciously, a segmentation that has been imposed on us, not chosen by us; this segmentation is in accordance with a person's ability.
In some way the world is designed for able people, in its widest sense; able physically, able intellectually, able economically, etc. As you depart from the standard of normality, ghettos appear that are helped to a larger or smaller extent by the solidarity of the rest of society. This solidarity usually results in giving access to these groups to the goods and services that exist in the society and have been designed with market criteria. That is to say they are liable to be bought and, therefore, assuming the widest possible market, they are designed for the world of able people.
It is worthwhile reflecting on the meaning of "able". The dictionary of the Spanish language defines it as: "fit for something, with talent or qualities for a certain thing". That is to say, what determines the capacity is the object to which the quality is applied. Translated to everyday life, this can be summed up as follows: if you consider yourself "disabled" in mathematics, you will probably choose to study to become a lawyer rather than an engineer. And if we analyze ourselves from this perspective, we will discover that we are really "disabled" in many more aspects than in those in which we are "able". We make up for this lack by guiding our life toward those aspects for which we are more gifted. In the same way, it seems sensible that we should help the living environment of our Angelman children to be adapted to reach the maximum capacity of their natural abilities. In fact, we are doing this in our family environment and our houses have, in some way, the "Angelman mark". When visiting another Angelman family, we will probably all find "arrangements" in the kitchen, bedroom, bathroom, etc. that are only too familiar. Our objective should be to adapt, insofar as possible, other environments too, such as educational and their adult life to fit their real and potential capabilities.
2.0 The Experience of "New Horizon"
In 1980, a group of parents, the driving force behind the "New Horizon" Association, carried out a study and concluded that in Madrid and its province there was no center, either official or private, devoted exclusively to the treatment, therapy, rehabilitation and schooling of children who present or suffer serious dysfunction in communication, behavior and personality such as autism, aphasia, psychosis, hyperactivity, etc. The parents therefore decided to undertake the development of an educational project that embraced the whole cycle of their children's life, and was like a continuation of the family home of each of the children.
The two fundamental pillars on which the "New Horizon" Center is sustained are: learning techniques and individualized treatment.
The coordination between the Center and the parents is indispensable for the complete development of the child's learning. The parents are directly responsible for the putting into practice what has been learnt and for maintaining the new achievements over the weekends and vacations. Therefore, they should be completely informed of what their child does in the Center and, in addition, know how they can collaborate better in his education.
With a certain frequency, a Parents School is held, attended by all. Here questions on the methodology of behavioural techniques, general organization etc. is discussed.
2.1 Physical Description of the Facilities
The Center is located in Las Rozas, a town in the northwest area of Madrid. It is built on a plot of 8.000 square metres, given to the Association by the town council. It is made up of a main building, consisting of two floors of eight hundred square meters each. On the ground floor is the administration area, a gym, changing rooms, showers and toilets, occupational workshops and warehouse. The kitchen-dining room area consists of an office, pantry, kitchen, two dining rooms and a home dining room-workshop. The central area is an area for diverse activities. The first floor, accessed by a stairway and access ramp, is divided into two areas: one made up of six individual classrooms and four group classrooms, with toilets for boys and girls; the other is made up of three individual classrooms and four classrooms for groups with two toilets. Common to the two areas are the Psychomotor skills room, the music therapy classroom, a teachers room, a library, a meeting room and a tutor's office, as well as wardrobes, lockers, etc.
The center has been designed for a maximum capacity of 50 people on a half-board basis. It is divided into units for special professional teaching of autistic students and/or those with serious personality problems.
The program established for this professional education is concentrated in two areas:
- General educational area whose objective is the continuation of the integral education of these disabled people to achieve the maximum personal autonomy and social ability.
- Occupational area whose object is the professional training, according to their capabilities, in the skills of certain professions.
2.2 General Educational Area
The aim of the compensatory education is, on the one hand, to reinforce all the knowledge acquired by the students in the previous stage, adapting them to the new demands of their chronological age, and on the other hand, to enlarge the acquisitions of the current necessities, preparing them for their future life, especially from the point of view of personal autonomy.
We can make a division by work area, keeping in mind that the exact content of each area will depend on the student's level.
- Communication: individual language, group language, alternative communication, speech therapy.·
- Motor Activity: psychomotor skills, physiotherapy, special physical education, sports activities.
- Pro-social behavior: control of disruptive behaviors, inter-activated behavior, socialization both inside as well as outside the Center.·
- Daily life activities: toilet training, dressing, eating, personal care.·
- Cognitive Area: primary manual activities, pedagogic activities, cognitive development.·
- Formal education: maintenance and generalization of knowledge acquired in the areas of writing, calculation, reading, natural sciences, etc. and application of this knowledge in the new evolutionary stage.·
- Complementary activities: play activities, music therapy, hydrotherapy, relaxation.
2.3 Occupational Area
In this area, the aim is for the boys and girls to develop their best abilities in order to be able to have an occupation in their adult life, ending up having a paid job.
Leather Workshop
This is located in the area dedicated to workshops on the ground floor. It has a capacity for six students and two professors specialized in leather techniques.
The leather handicrafts are very diverse both regarding models and dexterities or abilities that the student needs. This activity can be adapted to children with either medium or high levels. On the other hand, our methodology with this type of child is focused on them learning handmade techniques that enable them to make various models.
Home
The objective of this workshop is to prepare the adolescent for the greatest independence in his environment, permitting him to be able to help in simple home tasks that keep him busy and facilitate his integration into the community in which he lives.
Pottery
The aim is that this workshop is the most creative in the Center. The psychically disabled children, such as autistic, Angelman, etc, are characterized, among other features, by having great difficulties in symbolization and creation, preferring concrete and very structured tasks. Nevertheless we believe imaginative work should be developed.
Gardening
Of the 8.000 square metres of land in which the center is located, 6.000 square metres are dedicated to lawns, gardens and gardening workshop.
Throughout the whole year, including winter, in the greenhouse built for this purpose, education in the gardening area continues, having three main aspects: learning, sowing and care.
Basketwork
An increasingly valued activity is the creation of objects and utensils with wicker and similar materials. This activity favors the development of fine motor skills of the hands.
Laundry
Besides being a very appropriate activity for children such as ours, and therefore with the possibility of finding a paid job, it also covers the necessities of the center
2.4 Group Homes
We currently have four Therapeutic Homes with capacity for 24 adults, four more are being built.
They are located in the opposite end of the plot. The home consists of a two-floor building that provides space for four flats of 160 m2. each. Each flat is made up of a family room, kitchen, dining room, two bathrooms, three double bedrooms and two singles. In the building under construction for the new homes, advantage has been made of the basement to build a heated covered pool and a new gym.
The aim of these Therapeutic or substituted Homes is to take the young disabled adult and provide him with a real home when his own home can no longer care for him or when it becomes more advisable for him to live in the substitute home rather than in his natural one.
This form of life is conceived as an alternative to the traditional boarding school, with the objective of maintaining a family situation: six disabled people and two therapists, who carry out the functions of substitute parents. These therapists, besides acting as parents, follow an appropriate methodology to promote the development of each disabled person.
2.4.1 Functional Organization of the Home
The therapeutic homes take in disabled people who are being assisted in one of the Rehabilitation Centers of New Horizon. The home is open throughout the whole year and its timetable is from 7 in the afternoon to 10 in the morning, the following day.
The Following is a Typical Schedule of Activities:
8,30 get up, take a shower and get dressed 9,00 set the table and have breakfast 9,20 clear up the kitchen 9,30 brush the teeth 9,55 go to the Educational and workshop Center 19,00 go back to the homes 19,10 put away the clothes in the closets 19,30 showers / organized Activities 20,30 dinner (Preparation, dinner and tidying-up) 21,15 brush the teeth 21,30 relaxation / Organized Activities / Free Time 22,00 go to bed
2.4.2 Objectives
The general approach of the Group Home service includes three main groups of objectives:
- That every disabled person is attended and taken care of in all daily activities and in all his necessities.
- To promote the person's integral development, helping him to maintain, to create and to develop to the maximum his physical, psychic, functional, and social capacities, etc.
- To achieve the happiness of these disabled people in their substitute home
2.4.3 Areas of Action
The therapeutic Homes, as their name indicates, try to cover not only the assistance aspect but also maintain a therapeutic role in close relation with the Educational Center, supporting, collaborating and generalizing abilities and behaviors that favor the integral development of these disabled people. Thus, the aim is to achieve the objectives mentioned previously through the following areas:·
- Communication and Language: The aspects of generalization, spontaneity and purpose of previously acquired learning is reinforced here.
- Personal Autonomy: The prime purpose of this area is the acquisition and maintenance of habits of personal autonomy (personal care, dressing, feeding, health).
- Everyday Home Tasks: The objective of this area is to prepare the disabled person for the greatest independence in his environment, enabling him to be able to collaborate in simple home tasks that keep him busy and at the same time facilitate his greater integration in the community.
- Socialization Activities: In this area we seek the social integration of these disabled people both inside and outside the home. For this, we promote interactive behaviour, control of disruptive behavior, participation in group activities, trips to different public places, preparation and holding of parties.
- Leisure and Free Time Program: We seek to teach to the disabled person to use their free time with a double purpose, first the use and enjoyment of the free time and second their personal enrichment, developing playing abilities, sports, hobbies, initiatives...
These activities are developing very satisfactorily and one of the factors that have contributed to this, and which we would like to highlight, is the internal distribution of the different spaces in the home.
The room dedicated mainly to Leisure and Free Time activities is a spacious area where we have tried to differentiate three specific areas: one dedicated to listening to music or watching the television, another section for table games (cards, dominoes, Parcheesi, etc.) and a place reserved for interaction games or simply to relax and rest. At certain times, given the size of the room, it can be used for holding parties and celebrations.
The sleeping accommodation is composed of three double bedrooms. We believe that the disabled people are able to share a room, as in most families. Regarding their location, it is worthwhile mentioning that are bedrooms on both sides of the main room, so that any possible emergency can be controlled more easily.
The two remaining rooms are individual and are reserved for the therapeutic personnel.
The two bathrooms are wide; each one has bathtub and separate shower for optimum use. With these people there are often emergencies and at the same time they frequently need the supervision of a therapist.
The kitchen-dining room is located in the same space with a completely therapeutic purpose. This is because in the Home, one of the areas in which more emphasis is given is that of everyday household chores: cleaning the dishes, setting the table, preparing the food, sweeping... Since we are talking about people with serious communication and behavioural problems, it is very useful for the therapist to be able to carry out the therapy with two of these disabled people carrying out different tasks. Example: one can be setting the table for dinner and the other is learning how to prepare a simple salad.
Lastly, it is important to underline the need to respect the spaces so that no architectural barriers exist, to prevent the use of wheelchairs at a given time.
It is also important to point out the necessity of a space dedicated to laundry since the washing, drying and ironing of clothes for these people represents a considerable volume.
2.4.4 Services
- Provisional Housing: The therapeutic homes can operate as provisional housing in circumstances such as: Temporary inability of their own parents. Vacations or sporadic weekends of their family. On the recommendation of the Center's technical team, for example, to carryout a specific therapy program, control of medication, etc.
- Periodic Housing: This formula is used when the natural family can attend the disabled person for certain periods: From Monday to Friday in the group home and the weekends and vacations at home. School days at home and weekends and vacations in the group home.
- Definitive Housing: We cannot forget that today's adolescents will be adults tomorrow and at some point of their life their family won't be able to care for them. At that moment the group home will be their permanent home. 2.4.5. Personnel
2.4.5 Personnel
The substitute parents are specialized therapists, trained for such tasks and who have very special human qualities. The best formula seems to be "parents" formed by a female and male therapist, but not necessarily having any relationship other than the strictly professional one.
The operational ratio is a pair of therapists for each home, that is to say, two therapists for six disabled people. This personnel to patient ratio is an important factor of the quality of care that can be provided. One of the substitute parents carries out the functions of coordinator of the homes.
2.4.6 Economic Aspects
The setting up and, above all, the survival of a project such as New Horizon is very conditioned by the guarantee, insofar as possible, of the necessary funds to develop all its activities.
At the moment, the financing of the center is mixed; the state contributes around 50% of the budget and the families contribute the other 50%. As an indication, a family pays around $500 per month.
At the moment, we are starting a financing plan whose objective is that the center be self-sufficient from the financial point of view. In this sense we seek to generate revenues, based on the sale of products and services that can be produced by the center, so that the contributions from third parties, either from the state or from the families, are reduced as much as possible.
For this, we have begun to market the products that are produced in the occupational workshops; this way the plants that we grow in the greenhouse are bought by the town council to decorate the parks and public gardens; we offer the leather products to companies for publicity purposes, incorporating their logos, etc; the laundry services are offered to hotels and restaurants in the city, etc.
Likewise, since we have our specialized personnel, we have thought about offering physiotherapy services to the old peoples homes in our area, which are many since it is one of the main residential areas of Madrid. For these physiotherapy services we will use the new gym and the covered pool that are specially designed and well-equipped for disabled people.
All at New horizon sincerely hope that you may benefit from the experience outlined in this presentation.
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