How does a Down Syndrome Foundation work?

The Down Syndrome Foundation of the Region of Murcia (FUNDOWN) explains in this article the activities and cognitive stimulation and rehabilitation programs they develop to help people with Down syndrome.

FUNDOWN was established as a non-profit foundation dedicated to the social and labor integration of young people and adults with Down syndrome and other intellectual disabilities since May 9, 1994. It is a non-profit entity and was declared a Private Charitable Foundation of an assistance nature (Order of May 14, 1995 – BOE 18/05/95).

As established in article 4 of its Statutes, the purposes of FUNDOWN are “the promotion and execution of all activities that contribute to the improvement of living conditions and seek the full family, social and labor integration and the development of a normal life for people with Down syndrome, within a framework of solidarity regarding other etiologies that involve some type of disability”.

Objectives of the Down Syndrome Foundation of the Region of Murcia

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

The Foundation has developed extensive and intensive work, seeking to respond to the needs and demands of our users and families. To make these aspirations a reality, FUNDOWN imbues each and every one of the services, programs and activities that are developed with values such as autonomy, independence, respect, self-determination, decision-making and control over one’s own life. All of this is aimed at enabling people with an intellectual disability to participate in their environment as they choose, with the rights and obligations that correspond to them as citizens and providing the necessary measures to equalize their opportunities with those they would have if they did not have that disability. With this mindset, the Foundation has grown and created services that advocate an integral approach to the person to enhance their level of autonomy and independence in all areas of their life.

Activities and programs

The activities and programs carried out by the Down Syndrome Foundation of the Region of Murcia adhere to 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 providing the necessary measures to equalize their opportunities with those they would have if they did not have that disability. This implies a rigorous respect for diversity that must be learned both by the person with a disability and by their family and the surrounding environment.

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

Services

The Down Syndrome Foundation of the Region of Murcia provides two services to people with intellectual disabilities:

• The Service for the Promotion of Personal Autonomy: SEPAP
• The Vocational Training and Employment Service: SEFE

Both respond to an adapted model to the new social mentality that exists to promote the social integration of this group to the highest levels, allowing the overcoming of the most protective and limiting models that had been foreseen for people with disabilities as the only option, thus favoring the improvement of quality of life in the group.

The Down Syndrome Foundation of the Region of Murcia understands that improving the quality of life of the group of people with intellectual disabilities should be pursued by promoting 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 are structured around three key aspects.

1. Promote a favorable attitude that allows enhancing and fully taking advantage of the capacities of people with disabilities, removing obstacles and compensating for their deficiencies so that they can join society under normal conditions.
2. Establish a rigorous, continuous and updated evaluation of their aptitudes and abilities, as well as of theirlimitations and restrictions.
3. Claim personal rights established in current legislation and the recognition of other rights that may allow them, even 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 structure, four cross-cutting areas stand out:

• Social work.
• Psychology.
• Pedagogy.
• Speech Therapy.

They are transversal areas because their scope of action is not limited to a user’s life stage, nor to a specific program or activity, but their particularity is to accompany the user and their family throughout their stay at the Foundation.

The rest of the areas are specific:

• Comprehensive and continuous training.
• Shared housing.
• Transition to the workforce and the employment area.

We will briefly present what is carried out from each of the Foundation’s areas and we will present them in the order in which the user encounters them upon entering FUNDOWN.

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

It is a transversal area within the overall operation of the School of Life Services of Fundown –SEPAP AND SEFE. Its transversal nature comes from being an area that attends to all users and their families throughout their life journey at FUNDOWN.

Our activities and interventions are carried out not only within the centers and services the Foundation has, but also in the community contexts in which our users and their families are embedded (housing, workplaces, health centers, etc.).

Programs

It carries out all its activities around 6 programs, one of which encompasses two parallel action programs:

1. Information, Orientation and Advice: This program is aimed at providing the user and their family with all the necessary information about FUNDOWN’s School of Life and other community services of interest according to their characteristics and needs. On the other hand, it aims to provide individualized support to families and users who, on a one-off or continuous basis, require advice.
2. Socio-family assessment: It focuses on the social assessment of users and their families, culminating in the preparation of their corresponding social report. The purpose is to obtain an overall view and knowledge of the situation of the user and family in order to program an adequate intervention, assessing the possibility of their incorporation into the programs already developed within the Area.
3. Management and Accompaniment: Its primary objective is to provide the support that both users and their families need at a given time to carry out any type of management related to administrative procedures, health or dependency.
4. Socio-family inclusion:  The main objective of the program is to support the family in their socio-family environment, providing members with resources to carry out Activities of Daily Living, organization and development of day-to-day tasks.
5. Dependency: Through this program information, orientation and advice on this procedure are provided, as well as support in such management. During the provision of this assistance, an exhaustive follow-up of each user’s files is carried out.
6. Family Support: Its objective is to offer support to the families of our users from a group, participatory, dynamic context and an exchange of experiences between families with similar concerns and interests. It is developed based on two lines of action that sometimes share joint activities.
   1. Parents’ School Program: This program aims to expand parents’ knowledge and training on topics related to their children and/or relatives, and other topics of interest. They are offered a space for learning and exchange of experiences. This space is essential for families to share their fears and concerns, inherent and logical, about the growth and self-determination of their children.
   2. Siblings’ School Program: This program aims to achieve greater involvement and success of brothers and sisters in education, training and other topics of interest that imply improving the quality of life of their siblings with disabilities.

2. Psychology Area

The Transversal Psychological Area is positioned within the overall operation of FUNDOWN’s School of Life services -SEPAP AND SEFE- with the particularity of accompanying the service user and their family throughout their stay at 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. That is, we promote the degree to which the person is capable of being guided by their own criteria.

Cognitive autonomy

The cognitive aspect integrates an individual stance that resists the pressure exerted by the opinions of parents and the peer group, leading the user to rely on their personal judgment (cognitive autonomy). Likewise, aspects of independence are worked on that are related to changes in the individual’s close relationships with their parents and other social agents.

Emotional autonomy

Emotional autonomy contributes to the personal appraisal of events, since affectivity encompasses the totality 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 others’ feelings and emotions, to discriminate between them and to use this information to guide thoughts and personal actions (Covey, 2000).

It is currently recognized as emotional intelligence and is part of the ability that allows participation in a situation through its affective understanding; it is a kind of intrinsic motivation that allows a better self-knowledge and a connection with others (emotional autonomy).

Behavioral autonomy

The ability to make independent decisions and take responsibility for them is also trained. This is the capacity for self-government, the degree to which a person usually decides and acts for themselves. It involves a decision-making process during which the person learns and begins to define themselves personally in various meaningful areas and gradually accepts responsibility for their actions (behavioral autonomy). We bet on people’s abilities and accompany them to discover them, we provide them with confidence and give them a sense of future.

The activities carried out by the area are aimed at covering the psychological, cognitive and emotional support needs presented by both users and families, with the aim of maximizing their possibilities for personal autonomy. These activities are developed through processes of evaluation, orientation, psychological intervention and follow-up.

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

Associated disabilities

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 shown that there is a high prevalence of dual diagnoses within intellectual disability (20%, 40% and studies that demonstrate the existence of up to 60% of psychological problems associated with intellectual disability, congenital or acquired).

Work with intellectual disability has shifted from focusing, in childhood, on a purely educational intervention and in adulthood on an assistance-based and purely pharmacological intervention, to a preventive and integrative approach. This increases life expectancy and therefore the field of intervention. The psychologist’s intervention in health is considered an essential action within the care provided to people with intellectual disabilities, especially when considering the current leading lines of work in this professional field from a biopsychosocial approach, which will inevitably impact the continued promotion of personal autonomy and prevention and support against subsequent deterioration and dependence.

We work on the prevention and delay of cognitive decline caused by aging as well as the dementias that occur. For this it is important to care for mental health throughout all stages of the user’s life.

Interventions in the psychology area

The Psychology area has six professionals who carry out the following actions:

2. Intervention process: Actions derived from treatments, psychological interventions or psychotherapies intended to improve and/or solve psychological problems of the Foundation’s users, whether these are personal, social or family in nature. Therapies may be of short, medium or long duration and imply the application of a scientifically validated and evidence-centered psychological treatment to solve psychological or psychiatric problems.

3. Follow-up process: This process ensures the maintenance of what has been acquired through previous interventions, as well as pursuing the prevention and detection of possible psychological alterations in the service users.

4.Psychological intervention in Shared Housing: 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, psychoeducation and dissemination.

5. Psychological evaluation for the assessment of Dependency: Assessment of the degree of dependency for people with intellectual disabilities according to the BVD (Scale for the Assessment of Dependency) and according to IMAS criteria, based on the specific Questionnaire created by the Area for this purpose.

6. Assessment of personal autonomy: Evaluation of each user’s level of personal autonomy through the application of psychological tests designed to assess adaptive behavior and functionality of the people evaluated.

7. Research and development of new programs: Collaboration of the Psychology Area in the research process and creation of programs proposed by Fundown’s School of Life Services, in order to improve and/or meet the demands and needs of our service users at every stage of their lives.

Program of Cognitive Stimulation and Rehabilitation for the users

It is in this area and within the process of group and individual psychological intervention that the Stimulation Program and the Program of Cognitive Stimulation and Rehabilitation for users are introduced.

This program makes sense from the point of view of improving our users’ cognitive competencies and the rehabilitation or maintenance of damaged or deteriorated capacities. Taking into account the cognitive and personality characteristics of the population we work with, it becomes essential to improve functionality and cognitive competencies for various circumstances ranging from their own intellectual disability, damage derived from organic problems such as epileptic seizures, psychotic outbreaks, severe mental illness associated with their own disability, substance use, treatment with psychotropic drugs, and other acquired disabilities such as accidents or head injuries, cerebrovascular accidents, etc.

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

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

We improved 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 the NeuronUP program.

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

• Motivate users with new exercises, as well as being able to perform them in a digital mode (using tablets, computers and digital whiteboards). The format offered by the NeuronUP platform is quite motivating for our users.
• Plan more quickly and individually.
• Access a wide variety of exercises categorized by cognitive area.
• Facilitate the correction of exercises when performed 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 adapt them to reading/writing, auditory, visual problems, etc.
• Be able to monitor the user’s online performance, allowing us to see their difficulties or improvements to plan new sessions. This also facilitates the evaluation and evolution of users.
• Better planning by allowing the organization of different sessions, and/or programs.
• Use and combine different work modalities: individual, in pairs, and in groups.

Therefore, the use of NeuronUP helps and/or facilitates the achievement of our users’ main objectives of autonomy and independence.

3. Pedagogy Area

This area is part of the operating structure of FUNDOWN’s School of Life as a transversal area, its fundamental purpose being to supervise the teaching/learning processes that take place in our services (SEPAP and SEFE), their areas and the programs and activities that integrate them. To this end, it has three pedagogues specialized in guidance, planning, evaluation, diagnosis and educational intervention.

The supervision and advisory processes carried out by our area reach both users and their families, as well as the professionals of our entity and those in our community who in some way influence our users’ life process.

One of our priority intervention lines consists of the identification of curricular competence levelsof our users in order to determine an individualized training pathway adjusted to their real needs at a given time, as well as to articulate the necessary and essential activities to ensure that training processes are carried out effectively and promote the highest possible degree of autonomy.

Lines of action

The lines of action we carry out are aimed at:

• Pedagogical analysis, assessment and 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 teaching materials
• Direction and management of working groups
• Creation of a network of networks
• Training and dissemination of activities
• Pedagogical advice to professionals, users and families
• Research

From the transversal Pedagogical area, initiatives are promoted that encourage the highest levels of autonomy in our users and favor their social and labor insertion. Below are the training activities that currently make up the area:

Secondary Education Graduate Course

This course allows the user to achieve a higher level of educational knowledge, obtain the Secondary Education Certificate and thereby improve their employment prospects.

Support for obtaining a driving license. Class A1 and B permits

Currently, having a driving license is a very valuable work tool for our users to access the labor market, since most jobs are located in industrial estates and public transport lines generally have limited access.

Support for external training

In this course the student will find: individualized support and follow-up; tutorials in which the student will raise their doubts; guidance on the type of exercises to overcome; time organization in the exam; content structure; encouragement of intuition, agility, reasoning ability and resilience and everything the student needs to achieve their goal.

4. Speech Therapy Area at the Down Syndrome Foundation of the Region of Murcia

The Speech Therapy area is configured as another area within FUNDOWN’s Personal Autonomy Promotion service whose primary objectives are the prevention, diagnosis, prognosis, treatment and comprehensive evolution of human communication disorders, whether related to speech or language, including written language comprehension and expression as well as non-verbal communication.

People with intellectual disabilities have communicative needs that may sometimes be altered, failing to convey what they need, want or desire, which affects their well-being and relationships with others.

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

Main lines of action

1. Prosody alteration
2. Language and speech delay
3. Dysphasia
4. Stuttering (tonic, clonic, mixed)
5. Echolalia
6. Dyslexia
7. Functional articulation disorders
8. Malocclusion and lip seal
9. Inadequate breathing pattern
10. Blowing/airflow problems
11. Swallowing problems
12. Dysgraphia, dysorthography
13. Fine motor problems
14. Visual and auditory attention problems
15. Expression and comprehension

Recently created, the area has five professionals and is one of our areas that presents a higher level of innovation. This is so for two reasons:

1. The first has to do with the way the programs are designed. Their flexibility and the integration of knowledge allow addressing the uniqueness of each of our users and providing a real and adjusted response to their needs throughout their lives.
2. The second relates to the working methodology used, Cooperative Learning. Choosing this methodology has led to the reformulation of all the programs grouped in this area in order to be able to implement them in practice with the greatest guarantees of success.

The programs delivered by this area are organized around two major areas of action, depending on the type of population to which they are directed.

Basic Programs

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

• Social Skills
• Information and Communication Technologies
• Basic Training
• Leisure
• Affectivity and Sexuality
• Urban Autonomy
• Money management
• Autonomy at Home

Modalities

Two modalities are considered when implementing these programs.

1. The first modality involves the design of an individual pathway. In this case, each user, based on the psychopedagogical evaluation and their particular situation, would be incorporated into the part of the program that best suits their needs.
2. The second modality, which we have called integrated programs, would incorporate in each educational action those areas of the different educational disciplines that best meet the needs of a specific group of users. In this way, each educational action would be configured by the set of competencies and skills corresponding to certain programs, based on the needs and demands of our users.

Specific Programs

The so-called Specific Programs, for their part, are aimed at users who are in the initial phase of cognitive decline, or in a more advanced phase.

There are three programs that currently respond to this demand:

• Maintenance of Work Competences
• Skills Stimulation
• Daily living skills / Active Aging

Under these guiding principles the Transition to the Workforce Area structures all its intervention around the users’ Training Pathway which is divided into three programs that constitute it, according to their individual training stage. The programs we refer to are:

1. Vocational Guidance Program
2. Vocational Training Programs
3. Pre-work Qualification Programs

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

• Vocational and Professional Guidance
• Promotion of the user’s capacity and decision-making power
• Support and advice to families and users
• Tutoring
• Evaluation and monitoring of the Training Pathway
• Search for external activities and support to professionals and users in such activities

Methodology

The general methodology of the area’s interventions is marked by two fundamental premises that give it uniqueness.

On the one hand, the carrying out of training activities in real work contexts and on the other, the recognition and respect for each user’s individuality, their wishes and motivations.

Ultimately, the training process we propose from the Transition to the Workforce Area allows us to adapt to our users’ needs and give continuity to our activities. We preserve, at all times, their educational and training intentionality. Thus, the pathway we propose allows us to respond to the needs that our users present at this stage of their lives. We guide their steps toward a labor inclusion that is beneficial and helps consolidate their autonomy and independence.

At the end of the whole training process, when the student knows a trade, obtains good assessments in quality and performance and applies the labor skills required to access a possible job, they gain access to the FUNDOWN Job Bank.

7. Employment Area

The Employment Area is part of the Employment and Training Service (SEFE) of the School of Life of the FUNDOWN and has eight professionals. Its purpose is to find and promote new ways of  Employment Integration. They are aimed at users who, once they have completed vocational training processes, request to be incorporated into the world of work.

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

The service provided includes activities of:

• Job guidance
• Employment prospecting
• Personnel selection
• Active employment pool
• Support for insertion
• Person-to-job adaptation
• Support in job performance
• Advice and support to companies: grants and subsidies for hiring, submission of candidates, monitoring of placements.

And, in general, all those activities that form the consolidation of the full process of labor integration —attending to a Pathway of Integral and Personalized Inclusion, based on the principles of integration, normalization, autonomy and independence.

The supported employment methodology is the one that best aligns with the Foundation’s fundamental goals. These goals are focused on full family, social and labor integration and the development of a normal life.

From this area, it is also advocated that the Special Employment Centers play a fundamental role in the labor integration of people with intellectual disabilities, provided this figure is not distorted. Special Employment Centers, as sheltered employment, should be used as companies for job creation. But they should also be centers that enable the comprehensive development of the person with a disability, facilitating their access to ordinary employment in cases where the workers’ abilities and motivation so advise.

Main directions

The FUNDOWN develops different lines of action in the field of labor integration of people with intellectual disabilities. To achieve this objective the Employment Area works in two main directions:

1. Employment in Ordinary Companies. Through three strategies of labor insertion

• Internships in companies: Subsequent to a vocational training course. Their main objective will be to consolidate practical training with regard to task execution and socio-labor skills of a specific profile.
• On-the-Job Training: It is a structured training process carried out directly at the workplace. The aim is to provide both the knowledge and necessary skills to perform the tasks of that position, as well as to promote subsequent hiring.
• Supported Employment: A form of employment aimed at the labor integration of people with intellectual disabilities into the ordinary labor market. This model can be understood, as defined by Bellver Silván (1994), as: “An individualized technical support system that addresses a person’s work and social skills and whatever technical aids and adaptations are required so that the worker with a disability can contribute as any other citizen in a real job at an ordinary company”.

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

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

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

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

The Shared Housing Area is part of the Areas of the Service for the Promotion of Personal Autonomy SEPAP of FUNDOWN.

The Area has housing conceived as a training context for the Autonomous and Independent Living of the group of people with intellectual disabilities. We promote learning scenarios for preparing and appropriating habits and behaviors that enable the possibility of developing an autonomous life. We want the person with a disability to have an active and leading role in the decisions that govern their life.

People with intellectual disabilities live alongside young people without disabilities (mostly university students). It promotes an interaction that generates the learning necessary for acquiring psychoeducational tools. 

Mediators

The area, eminently training-based, involves a journey in which people without disabilities (Mediators), are the guides for the internalization of learning. Mediators require training in the topic of Pedagogical Mediation. This will allow them to carry out their role as educational models in practice.

The learning path taken by the members of the Area is made up of different modalities. They are characterized by teaching content on Autonomous and Independent Living.

The Area is defined by a holistic work with all social, family and cultural agents linked to people with disabilities. That collaboration and active participation allows individuals to root themselves in world experiences and develop all spheres of their personality. The objective is to enhance and stimulate people capable of feeling, thinking, acting and valuing.

Activities

1. Promote young people’s access to the housing area to carry out volunteering
2. Develop skills and capacities in volunteers for living together in a way that generates autonomous life learning
3. Develop teaching-learning processes that empower users. We seek greater personal autonomy and better functionality for life, in different contexts under the various modalities of the Area:

• Friend Project
• Shared Housing
• Living Among Friends
• My Life Program

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