How do you work in a Down Syndrome Foundation? The work of FUNDOWN

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The Down Syndrome Foundation of the Region of Murcia (FUNDOWN) will explain the work of its foundation and the actions and programs it develops to help people with Down syndrome in its foundation.

FUNDOWN was set up as a non-profit foundation for the social and labor integration of young people and adults with Down syndrome and other intellectual disabilities on May 9th 1994. It is a non-profit organization and has been declared a Charity-Particular Foundation of a welfare nature (Order of May 14, 1995 – BOE 18/05/95).

Aims

As stated in Article 4 of its statutes, the target of FUNDOWN is “to promote and carry out all activities that contribute to the improvement of living conditions and seek full family, social and work integration and the development of a normal life for people with Down syndrome, in a framework of solidarity with other aetiologies that involve some kind of disability”.

Objectives of the Fundación Síndrome de Down de la Región de Murcia

One of the essential objectives of FUNDOWN is the global and total integration of the disabled person in society. It is intended that people with Down syndrome or any other type of intellectual disability have access to or the possibility of having an adequate and normalized socialization in the community.

The Foundation has developed a wide and intense prospect, trying to respond to the needs and demands of its patients and families. In order to make these aspirations a reality, FUNDOWN permeates each and every one of its services, programs and actions that are developed, with values such as autonomy, independence, respect, self-determination, decision making and control of one’s own life. All of this is aimed at allowing people with intellectual disabilities to participate in their environment as they choose, with the rights and obligations that correspond to them as citizens and enabling the necessary measures to equalize their opportunities with those they would have if they did not have this disability. With this mentality, the Foundation has been growing and creating services that bet on an integral work with the person to promote their level of autonomy and independence in all areas of their lives.

Actions and programs

The actions and programs carried out by the Down Syndrome Foundation of the Region of Murcia participate in the principles and values that define the philosophy of what we call the School of Life.

This philosophy promotes that people with intellectual disabilities can participate in their environment as they choose, with the rights and obligations that correspond to them as citizens and enabling the necessary measures to equalize their opportunities with those they would have if they did not have this disability. This implies a rigorous respect for diversity that must be learned both by the person with a disability himself, as well as by his family and the environment that surrounds him.

From this line of thought, it is understood that the processes of social and labour insertion of the users must be oriented towards achieving a life that is as autonomous and independent as possible. Thus, values and principles such as self-determination, control of one’s own life, autonomy, capacity to choose or independence are present both in the way in which FUNDOWN is organized, as well as in the different programs and projects that are carried out with the users and their families.

Services

The Fundación Síndrome de Down de la Región de Murcia provides two services to people with intellectual disabilities:

The Service for the Promotion of Personal Autonomy: SEPAP(in Spanish)
The Vocational Training and Employment Service: SEFE (in Spanish)

Both respond to a model adapted to the new social mentality that exists to favor the social integration of this group up to its highest levels, allowing to overcome the most protective and limiting models that had foreseen for the people with disabilities as the only option, favoring, this way, the improvement of the quality of life in the group.

The The Down Syndrome Foundation of Murcia understands that the improvement of the quality of life of the group of people with intellectual disabilities must be attempted by seeking the development of a normal life that facilitates their full integration in all areas of life, in a permanent respect for diversity.

Lines of work

Under this line of thought, the lines of work approved by the Foundation’s Board of Trustees are based on three key aspects.

To promote a favorable attitude that allows the full development and use of the capacities of people with disabilities, eliminating obstacles and making up for their deficiencies so that they can be incorporated into society under normal conditions.
To establish a rigorous, continuous and updated evaluation of their skills and abilities, as well as of their limitations and restrictions.
To claim the personal rights established in current legislation and the recognition of those others that may allow them, including through positive discrimination, to achieve an autonomous and independent life, as far as possible.

Areas of work of the Down Syndrome Foundation of the Region of Murcia

Among the areas of work and actions that are part of FUNDOWN’s gear, four transversal areas stand out:

Social work.
Psychology.
Pediatrics.
Speech Therapy.

These are transversal areas because their scope of action is not limited to a vital stage of the user, nor to a specific program or action, but their particularity is to accompany the patient and his or her family throughout their stay at the Foundation.

The rest of the areas are specific:

Comprehensive and continuous training.
Shared housing.
Transit to the world of work and the area of employment.

We will summarize what is carried out in each of the areas of the Foundation and we will present them in the order in which the user meets them at the entrance of FUNDOWN.

1. Area of Social Work at the Down Syndrome Foundation of the Region of Murcia

It is a transversal area within the global operation of the Fundown School of Life Services –SEPAP and SEFE. Its transversal character is given by the fact that it is an area that attends to all users and their families, during their entire life itinerary in FUNDOWN.

Our actions and interventions are developed, not only within the centers and services that the Foundation has, but also in the community contexts in which our users and their families are inserted (housing, work centers, health centers, etc.).

Programs

It develops all its actions around 6 programs, one of which includes two parallel action programs:

Information, Orientation and Advice: This program is aimed at providing the user and his/her family with all the necessary information about FUNDOWN’s School of Life and other community services of interest to them due to their characteristics and needs. On the other hand, it is oriented to provide individualized support to families and users who, in a punctual or continuous way, need advice.
Social-family evaluation: It is focused on the social evaluation of the users and their families, culminating in the realization of their corresponding social report. The objective is to obtain a vision and knowledge of the global situation of the user and family, to be able to program an adequate intervention, valuing the possibility of its incorporation in the programs that are already developed within the Area.
Management and Accompaniment: Its main objective is to provide the support that both users and their families need at any given time, to carry out any type of management related to administrative procedures, their health or dependency.
Social and Family Inclusion: The main objective of the program is to support the family in its social and family environment, giving the members resources in carrying out the activities of daily life, organization and development of daily tasks.
Dependence: Through this program, information, orientation and advice on this procedure is provided, as well as support in this management. During the process of this help, an exhaustive follow-up of all the files of each user is carried out.
Attention to Families: Its objective is to offer support to the families of our users from a group, participative and dynamic context and to exchange experiences between families with similar concerns and interests. It is developed on the basis of two lines of action that sometimes share joint activities.
1. Parents’ School Program: This program aims to expand the knowledge and training of parents on issues related to their children and / or family, and other topics of interest. They are offered a space for learning and exchanging experiences. This space is absolutely essential for families to share their fears and fears, inherent and logical, of the growth and self-determination of their children.
2. School of Brothers’ Program: With this program we aim to achieve greater involvement and success of the brothers and sisters in education, training and other topics of interest that involve improving the quality of life of their brothers and sisters with disabilities.

2. Area of Psychology

The Psychological Transversal Area is located within the global operation of the Services of the School of Life of FUNDOWN –SEPAP and SEFE– with the particularity of accompanying the user of the services and his family throughout his stay in the Foundation.

The fundamental objective of the Psychology Area is to provide users with the appropriate personal strategies to achieve the best results in emotional, cognitive and behavioral autonomy. In other words, we promote the degree to which the person is capable of following his/her own criteria.

Cognitive autonomy

The cognitive aspect integrates an individual posture that resists the pressure exerted by the opinions of parents and the group of friends, leading the user to rely on his or her personal criteria (cognitive autonomy). Likewise, the aspects of independence that are related to changes in the close relationships of the individual with his/her parents and other social agents are worked on.

Emotional autonomy

Emotional autonomy contributes to the personal evaluation of events, since affectivity encompasses the entirety of the personal being. Therefore, it is one of the most powerful resources of socio-personal development and requires the exercise of the formal operations that imply the ability to manage one’s own and other’s feelings and emotions, to discriminate among them and to use this information to guide personal thoughts and actions (Covey, 2000).

Behavioral autonomy

The ability to make independent decisions and take charge of them is also trained. This is the capacity for self-government, the degree to which a person usually decides and acts on his or her own behalf. It involves a decision-making process during which the person learns and begins to define him/herself in various significant areas and to gradually accept responsibility for his/her actions (behavioral autonomy). We bet on people’s abilities and accompany them to discover them, give them confidence and give them a sense of future.

The actions carried out by the area are aimed at covering the psychological, cognitive and emotional support needs presented by both patients and families, with the aim of promoting their personal autonomy to the maximum. These actions are developed through the processes of evaluation, orientation, psychological intervention and follow-up.

We cover the different disciplines of the profession: social psychology, educational psychology, work psychology, legal psychology and especially health psychology.

The population with intellectual disabilities may or may not present other associated physical, sensory and mental disabilities such as psychiatric disorders or behavioral disorders. It has been proven that there is a high prevalence of dual diagnoses within intellectual disability (20%, 40% and studies showing the existence of up to 60% of psychological problems associated with intellectual disability, congenital or supervening).

Work with intellectual disabilities has moved from a focus on the childhood stage, from a purely educational intervention and the adult stage, from a welfare and purely pharmacological intervention, to a preventive and integrative approach. This increases life expectancy and therefore the field of intervention. It is considered, the intervention in health of the psychologist, an essential action within the attention given to people with intellectual disability, above all, contemplating the current leading lines of work in this professional field from a biopsychosocial approach which will have inevitable repercussions on the continued promotion of personal autonomy and the prevention and support of their subsequent deterioration and dependence.

We work on the prevention and delay of the cognitive impairment caused by the passage of time as well as the dementias that have occurred. For this, it is important to take care of mental health throughout all the user’s vital stages.

Actions in the area of psychology

The area of Psychology has six professionals who develop the following actions:

Evaluation process: Application of psychological procedures for collecting information, both clinical and psychometric, which lead to knowledge of the cognitive, personality, educational, work, social and family characteristics of the person being evaluated, as well as the orientation, selection or treatment of the subject. It concludes with the determination of a psychodiagnosis.
Intervention process: Actions derived from treatments, psychological interventions or psychotherapies, aimed at improving and/or solving psychological problems of the users of the Foundation, whether they are of a personal, social or family nature. The therapies can be of short, medium or long duration and involve the application of psychological treatment, scientifically validated and focused on evidence, for the solution of psychological or psychiatric problems.
Follow-up process: This process ensures the maintenance of what has been acquired through previous interventions, as well as the prevention and detection of possible psychological alterations of the service users.
Psychological intervention in shared housing: This consists of the evaluation of the user, family and mediators, psychological advice and guidance to the technical team, mediators and families, psychological intervention for the members, training, psycho-education and dissemination.
Psychological evaluation for the assessment of dependence: Assessment of the degree of dependence for people with intellectual disability according to the BVD (Scale for the Assessment of Dependence) and according to IMAS criteria, based on the specific questionnaire created by the Area for this purpose.
Evaluation of personal autonomy: Assessment of the level of personal autonomy of each user through the application of psychological tests aimed at evaluating the adaptive behaviour and functionality of the people assessed.
Research and creation of new programs: Collaboration of the Psychology Area in the research process and creation of programs proposed by the FUNDOWN School of Life Services, in order to improve and/or cover the demands and needs of our service users in each and every stage of their lives..

Cognitive Stimulation and Rehabilitation Program for patients

It is in this area and within the process of group and individual psychological intervention, where the Program of Estimation and Program of Stimulation and Cognitive Rehabilitation of the users is introduced.

EThis program makes sense from the point of view of improving the cognitive skills of our users and the rehabilitation or maintenance of damaged or deteriorated abilities. Taking into account the cognitive and personality characteristics of the population for which we work, it is essential to improve the functionality and cognitive skills due to various circumstances that range from their own intellectual disability, damage derived from organic problems such as epileptic seizures, psychotic outbreaks, serious mental illness associated with their own disability, substance abuse, treatment with psychopharmaceuticals, and other supervening disabilities such as accidents or traumas, strokes, etc..

Intellectual disabilities are often accompanied by other disabilities (physical, sensory, psychiatric, etc.) that affect the performance and cognitive efficiency of the people who suffer them.

From the beginning, the Area of Psychology, after the psychological and neuropsychological evaluation of the users, understood that it was absolutely essential to create a Program of Stimulation and Cognitive Rehabilitation that would provide our patients with the individual needs that were detected as necessary to promote their neuropsychological health and, as a consequence, to reach our ultimate goal: the promotion of the personal autonomy of our group

Improvement of the intervention with NeuronUP

At the Down Syndrome Foundation of the region of Murcia we had been implementing our own program for years when we discovered NeuronUP.

The NeuronUP platform has significantly facilitated the work of the Foundation’s psychologists, allowing us to improve the quality of our interventions on a cognitive level and helping us to achieve the following objectives:

To motivate patients with new exercises, as well as to be able to perform them with a digital modality (using tablet, computer and digital blackboards). The format offered by the NeuronUP platform is quite motivating for our users.
To plan with more brevity and in an individualized way.
Access to a wide variety of exercises categorized by cognitive area.
Facilitate the correction of the exercises when done online.
Easily create new exercises with the generators.
Select exercises according to the level of difficulty and the cognitive capacity of our users. As well as adapting them to reading and writing problems, auditory and visual problems, etc.
To be able to track the user’s performance online, allowing us to see their difficulties or improvements in order to plan new sessions. This also facilitates the evaluation and evolution of the users.
Better planning by allowing us to organize different sessions, and/or programs.
Use and combine different work methods: individual, in pairs, and in groups.

Therefore, the use of NeuronUP helps us and/or facilitates the achievement with our patients of their main objectives of autonomy and independence.

3. Area of teaching

This area is situated within the structure of operation of the School of Life of FUNDOWN as a transversal area, being its fundamental purpose to supervise the processes of teaching/learning that take place in our services (SEPAP and SEFE), its areas and the programs and actions that integrate them. For this purpose, it has three specialized pedagogues in orientation, planning, evaluation, diagnosis and educational intervention.

The processes of supervision and advice that take place from our area reach, both patients and their families, as well as the professionals of our entity and those of our community that affect in some way the life process of our patients.

One of our priority lines of intervention consists of identifying the levels of curricular competence of our patients in order to determine an individualized training itinerary adjusted to their real needs at any given time, as well as to articulate the necessary and essential actions to ensure that the training processes are developed effectively and promote the highest possible degree of autonomy.

Lines of action

The lines of action that we carry out are aimed at:

Analysis, assessment and Pedagogical Diagnosis
Design, monitoring and evaluation of educational programs
Planning and design of individual and group training plans
Evaluation of teaching/learning processes
Design and application of innovative educational methodologies
Design of multimedia didactic materials
Direction and management of working groups
Networking
Training and dissemination of actions
Pedagogical advice to professionals, patients and families
Research

From the transversal pedagogical area we are committed to educational initiatives that promote the highest levels of autonomy in our users and that favor their social and labor insertion. The training actions that currently make up the area are detailed below:

Graduate Course in Secondary Education

This course allows the patient to reach a higher level of educational knowledge, to obtain the ESO degree and with it, to improve their work possibilities.

Support to the driving license. Class A1 and B license

Currently, having a driving license is a very valuable tool for our patients to access the labor market, because most of the jobs are located in industrial areas and generally the transport lines have difficult access.

Support for external training

In this course the student will find: support and individualized follow-up; tutorials in which the student will raise his or her doubts; guidance on the type of exercise to overcome; organization of time in the exam; structure of contents; promotion of intuition, agility, reasoning ability and capacity to overcome and everything that the student needs to achieve his or her objective.

4. Speech Therapy area at the Down Syndrome Foundation of the region of Murcia

The Speech Therapy area is one more area within FUNDOWN’s personal autonomy promotion service, whose priority objectives are prevention, diagnosis, prognosis, treatment, and the integral evolution of human communication disorders, whether they are speech or language disorders, including the comprehension and written expression of language as well as non-verbal communication.

People with intellectual disabilities have communication needs that can sometimes be altered, not being able to transmit what they need, want or desire, influencing their well-being and their relationships with others.

The aim of this area is to rehabilitate possible speech, language or communication disorders and to allow people with verbal and/or hearing communication difficulties to relate and interact with others, establishing or expanding communication channels, through alternative or augmentative systems.

Main lines of action

Among the main lines of action in this area we can highlight:

Prosody alteration
Language and speech delay
Dysphasia
Dysphemy ( tonic, clonic, mixed)
Echolalia
Dyslexia
Functional dyslalia
Malocclusion and lip seal
Inadequate breathing pattern
Blow problems
Swallowing problems
Graphic design, dysortography
Fine motor problems
Visual and auditory attention problems
Expression and understanding

5. Area of Integral and Continuous Training

This area is organized around a series of programs aimed at supporting our patients, in a comprehensive and continuous way, in the different areas that make up their development throughout their life journey.

Recently created, the area has five professionals and is one of our most innovative areas. This is so for two reasons:

First, it has to do with the way the programs are designed. Its flexibility and the integration of knowledge allow us to attend to the uniqueness of each of our users and to give a real and adjusted response to their needs throughout their lives.
Secondly, one is related to the working methodology used, the Cooperative Learning. The fact that we have opted for this methodology has led to the reformulation of all the programs in this area in order to put them into practice with the greatest guarantee of success.

The programs offered by this area are organized around two main areas of action, depending on the type of population they are aimed at.

Basic Programs

Thus, the Basic Programs are those that are aimed at all our users and are:

Social Skills
Information and Communication Technologies
Basic Training
Leisure
Affectivity and Sexuality
Urban Autonomy
Money Management
Home Autonomy

Modalities

Two modalities are envisaged when implementing these programs.

The first modality, implies the design of an individual itinerary. In this case, each patient, based on the psycho-pedagogical evaluation and his/her particular situation, would be incorporated into the part of the program that best suits his/her needs.
The second modality, which we have called integrated programs, would incorporate into each educational action that part of the different educational disciplines that best suits the needs of a group of determined patients. In this way, each educational action would be configured by the set of competences and skills, corresponding to certain programs, based on the needs and demands of our users.

Specific programs

The so-called Specific Programs are aimed at those patients who are in the initial phase of cognitive impairment, or at a more advanced stage.

There are three programs that are currently responding to this demand:

Maintenance of Labor Competences
Skill Stimulation
Life Skills/Active Aging

6. Area of Transit to the World of Work

The area of transit to the working world currently has eleven professionals and its priority objective is to provide our patients with the necessary teaching/learning spaces for their training and specialization, in a specific professional profile, with the aim of their future social and, mainly, labor inclusion.

It is structured around 3 main programs that are developed in the SEPAP and the SEFE. In this way, the area of transit to the working world is an inter-service area, which allows users to transit from one to another, according to their training needs. The ultimate goal is always that each patient receives the most appropriate and personalized training for their evolution, within its training itinerary.

From this area, therefore, we plan to serve as a guide to our patients in their journey, when it comes to discovering their professional profile, which must be in accordance with their motivations, needs, expectations and capabilities.

Under these guiding principles, the Transit to the Working World Area articulates all its intervention around the Training Itinerary of the users, which is divided into three programs that constitute it, according to their individual training moment. The programs we refer to are:

Vocational Guidance Program
Vocational Training Programs
Pre-employment qualification programs

In addition, the area carries out other complementary actions to achieve the optimum preparation of our users, such as:

Vocational and Professional Orientation
Promoting user capacity and decision-making
Support and advice for families and users
Tutorials
Evaluation and monitoring of the Training Itinerary
Search for external actions and support for professionals and users in these actions

Methodology

The general methodology of the area’s interventions, in any of its programs, by all professionals and even with families, is marked by two fundamental premises that make it unique.

On the one hand, the realization of the training actions in real work contexts, that is directly in the companies and, on the other hand, the recognition and respect not only of the individuality of each user, but also of their desires and motivations in the planning of their individual training itinerary.

In short, the training process that we propose from the Transit Area to the Working World allows us to adapt to the needs of our users and to give continuity to our actions, preserving, at all times, their educational and training intention. Thus, the itinerary we propose allows us to respond to the needs that our users present at this stage of their lives, orienting their steps towards a labor inclusion that is beneficial to them and contributes to consolidate their autonomy and independence.

At the end of the whole training process, when the student knows a trade, obtains good evaluations in quality and performance and applies the work skills required to access a possible job, he or she accesses the FUNDOWN Job Bank.

7.Employment Area

The Employment Area is part of the Employment and Training Service (SEFE) of the Down Syndrome Foundation’s School of Life in the Region of Murcia and has eight professionals. Its aim is to find and promote new ways of labor insertion aimed at users who, once they have completed their professional training processes, demand to be incorporated into the world of work, without having to cover this need with the usual lines of protected employment.

This area has achieved brilliant results in the access of the Foundation’s users to the ordinary labor market and in the consolidation of their jobs. It should be noted that the actions developed by the employment service are aimed at satisfying the needs of the main agents involved in the process of labor integration: user, family and company.

The service provided includes actions of:

Employment guidance
Job search
Recruitment
Active Job Market
Accompanying the insertion
Person-to-Position Adaptation
Support in the performance of the job
Advice and support to the company: Aid and subsidies for recruitment, presentation of applications, monitoring of placements.

And, in general, all those actions that make up the consolidation of the full labour integration process, attending to an Integral and Personalised Inclusion Itinerary, based on the principles of integration, normalisation, autonomy and independence.

The methodology of Employment with Support, which has been used since the birth of this area and, until now, as a model of labour insertion, is the one that is most in line with the fundamental aims of the Foundation, which are the full family, social and labour integration and the development of a normal life.

This area is also committed to ensuring that the Special Employment Centres play a fundamental role in the integration of people with intellectual disabilities into the workplace, provided that this figure is not undermined. The Special Employment Centres, as the protected employment that they are, must be used, of course, as companies for the creation of employment, but they must also be centres that make possible the integral development of the person with a disability, making possible their access to ordinary employment in those cases in which the capacities and motivation of the workers so advise.

Principle Directions

In short, the Down Syndrome Foundation of the region of Murcia has been developing different lines of action in the field of labor insertion of people with intellectual disabilities throughout its years of experience. To achieve this objective, the Employment Area works in two main directions:

Employment in the Ordinary Company. Through three strategies of labor insertion

Internships in companies: After a professional training course, the main objective will be to consolidate the practical training in terms of carrying out tasks and social-working skills of a specific profile.
On-the-job training: This is a structured training process that is carried out directly in the workplace, with the aim of providing both the knowledge and skills necessary to carry out the tasks of that position, as well as encouraging subsequent recruitment.
Employment with Support: A modality of employment oriented towards the labour insertion of persons with intellectual disabilities in the ordinary labour market, this model can be understood, as defined by Bellver Silván (1994) as: “A system of individualised technical support that addresses the labour and social skills of the person, and as many technical aids and adaptations as are required, so that the worker with disabilities can contribute as another citizen in a real job in an ordinary company”.

Creation of companies (C.E.E.) and support to companies already created by the Foundation.

FUNDOWN has a Special Employment Center in which most of its workers are people with intellectual disabilities:

FUNDOWN Plant L. Special Employment Center participated by FUNDOWN, its main activity is linked to nursery and gardening and is located in Paraje de Librilla

8. Shared Housing Area in the Down Syndrome Foundation of the Region of Murcia

The Shared Housing Area forms part of the Areas of the Service for the Promotion of Personal Autonomy -SEPAP- of the Life School of the Down Syndrome Foundation of the Region of Murcia -FUNDOWN.

The Area has housing conceived as a training context for the autonomous and independent life of the group of people with intellectual disabilities, developing learning scenarios for the preparation and appropriation of habits and behaviours that lead to the possibility of developing an autonomous life, where the person with a disability has an active and leading role in the decisions that govern his or her life.

People with intellectual disabilities live together with young people without disabilities -mostly university students- which promotes an interaction that generates the necessary learning for the acquisition of psychoeducational tools that allow this group to develop and participate in socio-cultural contexts.

Mediators

The area, impregnated with an eminently formative character, entails a progressive path in which people without disabilities, called Mediators, are the guiding and teaching elements for the internalization of learning. In order to carry out this task, Mediators require training in the subject of Pedagogical Mediation, which will allow them to put into practice their function as educational models, whose objective is to develop the skills and knowledge in people with disabilities that will allow them to direct their lives based on their choices in the different social, cultural, family and professional contexts.

The learning path followed by the members of the Area is made up of different modalities, characterized by the contents of teaching about Autonomous and Independent Living, which must be appropriated in order to advance at greater levels of empowerment.

The Area is defined by a holistic work with all the social, family and cultural agents linked to people with disabilities, whose collaboration and active participation allows individuals to take root in the experiences of the world and develop all the spheres of their personality, strengthening and stimulating people capable of feeling, thinking, acting and valuing according to their own criteria and that of the community in which they live.

Actions

Promote the access of young people to the housing area for volunteering
Develop skills and capacities in volunteers for a coexistence that generates autonomous life learning
To develop teaching and learning processes that empower users for greater personal autonomy and better functionality for life, in different contexts under the different modalities of the Area:

- Project Friend
- Shared Housing
- Living among Friends
- My Life Program

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