Illustration by Lídia Belchior
Empowering and capacity building for individuals with Intellectual and Developmental Disabilities: needs, hindrances and promotion on the learning and developing of new skills
Daniel Alves
Abstract
The “Same Same – A Capacity Building and Empowerment e-mentorship Program for People with Intellectual/Developmental Disabilities (IDD)” is a Program with the objective to test the reliability and effectiveness of a Training and Empowerment Program for Mentors and to provide people with Intellectual and Developmental Disabilities (IDD) with the knowledge, skills, and confidence to lead their peers, with or without IDD.
An ethnographic research and report was carried out, with a focus group created to answer and investigate these problematics and questions, a survey of the specific needs and support that individuals with IDD need to develop new skills, knowledge and access new job opportunities. The session included a total of eight participants, considering four distinct profiles, and was divided into five phases.
This article describes the field work done, the data analysis and the results of this study in Portugal.
AnthroArt Podcast
Daniel Alves
Author
Daniel Alves is a Portuguese anthropologist, with a degree in Anthropology and a Master’s in Evolution and Human Biology from Universidade de Coimbra, as well as a postgraduation in SME management. After obtaining his Master, in 2017, and having developed academic work with laboratories such as CIAS and LAF in Coimbra, he delved into the professional world as a UX researcher and anthropologist. In 2020, he founded “Ambigrama”, the first Portuguese private organization focused in applied and business anthropology. Since then, he has developed various projects with private and public organization, NGO’s and governmental institutions, in areas such as health, sustainability, social inclusion, mobility, gender equality, sports and arts.
Lídia Belchior
Illustrator
Lídia Belchior is an artist with an oil painting education from SBSI, in Lisbon (2000). She started by painting in black and white using charcoal, though today her art is dominated by colour.
She has multiple collective and individual expositions to her name, in places such as Art Center Museum in Figueiró dos Vinhos and de Fernando Namora Museum in Condeixa.
Introduction
The “Same Same – A Capacity Building and Empowerment e-mentorship Program for People with Intellectual/Developmental Disabilities (IDD)”, hence forth referred to as “Same-Same”, is a project funded by the European Union, under the ERASMUS+ Program. Its objective is to test the reliability and effectiveness of a Training and Empowerment Program for Mentors and to provide people with Intellectual and Developmental Disabilities (IDD) with the knowledge, skills, and confidence to lead their peers, with or without IDD (Intellectual and Developmental Disabilities), in physical activities designed to improve their physical condition, creating processes and systems of inclusion, integration and acceptance of the qualities, capabilities and strengths of individuals with these conditions.
Promoted by a consortium of seven European partners, one of them being the Ginásio Clube Português (GCP), an ethnographic research and report was carried out, with a focus group created to answer and investigate these problematics and questions, a survey of the specific needs and support that individuals with IDD need to develop new skills, knowledge and access new job opportunities was carried out, to build evaluation tools that will test the effectiveness and reliability of the program.
Following, I will describe the methodology applied, the study sample, the results of the session and the overall conclusions of the study.
Methodology
The data and information used in this study were obtained through a focus group interview session on November 8, 2023. The session included a total of eight participants, considering four distinct profiles:
- two participants were individuals with an Intellectual and Developmental Disabilities condition;
- two participants were parents or legal tutors of individuals with an Intellectual and Developmental Disabilities condition;
- two participants were representatives of entities that work with individuals with Intellectual and Developmental Disabilities conditions;
- and finally, 2 technicians with experience in supporting and working with individuals with Intellectual and Developmental Disabilities conditions.
The session was conducted by the moderator Daniel Rodrigues Alves, from the organization “Alves & Ferreira – Consultoria e Soluções Empresariais LDA.”, also known as “Ambigrama”, and as co-moderator was Ana Louseiro, from the organization “Ginásio Clube Português”, a professional of special education and rehabilitation with years of experience working with individuals and people with special needs, such as Intellectual and Developmental Disabilities.
The selection of participants was made by the national promoter of the project, “Ginásio Clube Português”. The interview was conducted in an isolated room, with the participants distributed in a circle, with both the moderator and co-moderator facing each other. The distribution of the participants in the circle was done at random, to insure the validity of the answers. The interview was recorded using both audio and video. The session was conducted by Daniel Rodrigues Alves.
The transcription of the session was done, first, through a speech-to-text program, followed by a manual transcription using the first one, to correct any mistakes, spelling and confirm the data and information present. During the review, all comments and opinions given by participants were made confidential and anonymous.
The session was divided into five phases:
- the first phase of the interview considered a presentation phase, in which all participants, as well as the moderators, introduced themselves, and the participants expand on their interest and motive for being present;
- the second phase focused on the specific/special needs of people with Intellectual and Developmental Disabilities when it comes to learning and developing new skills;
- the third phase expanded on the hindrances and difficulties that stop or slow down the learning and developing of new skills in people with Intellectual and Developmental Disabilities;
- the fourth phase considered the conditions that support or promote the learning and developing of new skills in people with Intellectual and Developmental Disabilities;
- and the fifth and final phase and a conclusion phase, where the most important, relevant, and interesting opinions and ideas of the participants were revisited, to allow the group to confirm those as well as allow them to expand of add more information to these points, creating a more focused and synthetized version of the session.
Finally, as per the results presented next, the following acronyms were used: IDD – Intellectual and Developmental Disabilities;
Analysis and Results
After the first phase of the session, the second phase focused on the specific and/or special needs of individuals with an Intellectual and Developmental Disabilities condition in moments or processes of learning or development of new skills.
The most denoted necessity by the group was empathy, the need to have the ability and intention to understand people with Intellectual and Developmental Disabilities condition was mentioned, as well as not to be afraid to interact, talk and live with these people. Having patience and being tolerant of people with IDD condition is also an issue mentioned.
Another important need mentioned was tolerance, of the possibility to accept mistakes. Be able to understand that people with IDD condition may make mistakes more often until they reach the desired level of learning/knowledge, adapt the acquisition of new knowledge to these people, with strategies such as simplifying tasks, that is, breaking down complex tasks and actions into several tasks or simpler actions that, together, create the complex process; explanation of tasks; continuity of processes, i.e. to support and promote the learning processes of people with IDD conditions; and to have a balance in the treatment of people with IDD conditions, that is, to understand that there has to be a level of adaptation to these people, but, at the same time, not to create facilities that lead to insufficient learning and/or obtaining knowledge.
Finally, emphasis was placed on the issue of support and accompaniment, the need to understand and know the context in which people with IDD condition find themselves when they are in the process of obtaining new knowledge, the inherent difficulties, was highlighted; support from family and/or household members was also mentioned, support from those closest to them; and, finally, the need for a point of reference for these people, mostly in the form of a reference individual, a rolemodel, with an IDD condition, who can show and demonstrate that it is possible to obtain these new skills and/or knowledge.
The third phase of the interview focused on the difficulties that can hinder, impede, and delay the learning or development of new skills by people with IDD conditions.
The problematic most noted by the participants in this part was the lack of autonomy on the part of people with IDD status. The first factor considered is the lack of preparation in schools, because, except for schools specialized in the work and support of people with these conditions, public schools have a lack of preparation regarding the support, support, and monitoring of individuals with IDD, as well as a lack of integration and inclusion of these with the rest of their peers, which leads to segregation and difficulties in learning and socializing. It was also highlighted the lack of autonomy skills by individuals with IDD conditions, such as quality communication with others, at an earlier stage of their lives, which leads to difficulties in the later stages, again also related to the failures in the schools.
Another relevant point was the lack of support from associations, institutions and companies that intend to have to work and work with individuals with IDD conditions, above all on the issues of lack of knowledge of the capabilities of people with IDD, the understanding and awareness of the diversity of existing IDD conditions, and the limitations and specificities of each one, as well as a lack of knowledge of the existing professions, available and most suitable for them, which leads to a failure in the process of supporting these people and the mismatch between demand and supply, and creates situations that can contribute negatively to the view of the capacities and valences of individuals with IDD conditions.
The third point raised is related to employability and flaws in the hiring process, with a focus on private entities, it was considered that there is a lack of awareness of these organizations about the communities and individuals with IDD, as well as a lack of knowledge of their context and needs. It was also considered that there are flaws in the connection mechanisms between these people and the companies, a situation considered a failure of the associations as well. Finally, something mentioned was the lack of motivation on the part of individuals with IDD to have a job and to look for one. This issue was referred to both internally, by the individuals themselves, due to issues such as lack of interest or understanding of the importance of this process, as well as externally, caused by the difficulties experienced by other people with the same condition, as well as the lack of external support in the search for employability.
Finally, it was considered that there is a lack of actions to raise awareness of the needs of people with IDD conditions. It was considered that there is a lack of projects that support, promote, and demonstrate the possibilities and capacities of these people. Demonstrations such as the use of examples of people with IDD status who are in a situation of employability or carrying out a professional activity to some extent was considered important and necessary to be more disseminated, trying, however, to escape the idea of “success stories”, using more realistic examples, which demonstrate previous and current difficulties and how to mitigate and/or overcome them. Another measure considered important and not applied enough is to allow the person with IDD condition to demonstrate the functions in a practical way at the time of hiring, as the interview system is notoriously counterproductive for individuals with these conditions, that is, to create a more practical and less theoretical process, which allows them to present their skills.
The fourth phase of the interview focused on the activities, actions and initiatives that promote the learning and development of new skills of individuals with IDD.
The most important factor is the motivation of people with IDD to want to develop these processes. In this factor, several initiatives, activities, and feelings that promote this motivation were mentioned. One of the most mentioned was the achievement of autonomy by individuals with IDD when they learn new skills, that is, being able to be more independent, having something of their own, such as money, possessions, among others, and demonstrating that they can perform or perform an activity creates motivation in them to continue learning more and obtain more knowledge and skills. However, this may not be an identical factor for all people with IDD, as mentioned. The possibility of feeling useful, not feeling like a burden to the people around them is also a motivating factor, as well as getting support from family and close people when they start a new activity or career.
The second relevant point is the understanding of what individuals with IDD want and like to do, that is, understanding what the functions are they like to do and what they want to do. Deep Listening, the process of truly listening to what people are saying, as well as adapting situations to people are two of the processes that can be used to achieve this goal. Finally, having a rolemodel, someone who also possesses an IDD condition who can demonstrate, teach and/or prove that it is possible to learn and develop new skills.
Finally, on-site learning was denoted for individuals with IDD. Experiencing in the first person, and learning on the spot, seeing, and participating in the activities are factors considered important to achieve the goal. The support of professionals and individuals with the desired skills and knowledge is also important, with them explaining the importance of processes, actions, and information, as well as the framework of skills for individuals with IDD.
Final Considerations
The purpose of this study was to identify the specific needs and supports that individuals with IDD need to develop new skills, knowledge, and access new employment opportunities.
Based on a focus group session with 8 participants, below are the major conclusions obtained.
One of the factors considered most important was the need for support for individuals with IDD conditions. Monitoring, understanding, empathy, tolerance and creating motivation for these people, as well as the lack of support from associations, institutions and companies are all factors that are directly related to the provision of support and/or the lack of it to people with IDD. This issue was mentioned in all phases of the session, at different times and in different definitions. That said, we can say that working and promoting support for individuals with IDD status, at a personal, family, professional and social level is crucial, with actions such as public awareness of IDD status, processes that help the integration and normalization of the presence of these people in social and professional contexts or promoting activities and/or actions that translate into motivation to learn and obtain new knowledge from them are just a few possibilities of answer this factor.
The second determining factor is the autonomy of individuals with IDD conditions. The lack of autonomy felt by these people, often caused since school time, as well as the motivation to have autonomy and have some control over their own lives. The lack of actions to raise awareness of the needs of these people is also related to this issue, as it limits the autonomy of choice, promotion, and professional and personal movement of these individuals due to a lack of understanding of their condition. Focusing efforts on creating systems that promote the autonomy of individuals with IDD conditions from the beginning of learning is something important and necessary, such as creating inclusive education systems in public schools and creating initiatives that sensitize institutions, organizations, and groups about IDD conditions so that there is a creation of systems that promote autonomy are some options.
Thirdly, we must consider the issue of rolemodels and their necessity. It was considered, at various points in the interview, that there is a need to see real cases of people with these conditions being able to achieve their goals, a point of reference for people with IDD condition, a mentor, preferably who also has an IDD condition and who can, through this direct contact, motivate, support, help, guide and teach others, demonstrating that it is indeed possible to learn and gain new knowledge,
The last point of interest is the hiring and employability process. Shortcomings in the hiring process were identified, such as lack of awareness, knowledge, the mechanisms of connection between individuals and organizations, and the evaluation process, specifically theoretical vs. practical interview questions. At this point, the need is to develop processes and systems that contribute to the improvement of hiring processes and the increase of employability, such as the creation and development of offices focused on the connection between the business fabric and people with IDD conditions, awareness programs with business groups and their representatives, or the creation of hiring processes targeted to the needs of these people, focusing on their strengths.