1. Goals of the project
This document was made as part of a project “Unlocking Freedom through Adult Education: The role of adult education in supporting the de-institutionalization of people with disabilities in the community”. The project is funded by the “Erasmus+
“ program 2014-2020, CD 2: Projects for strategic partnerships”. Contract No. 2015-1-IE01-KA204-008666).
The methodology was made in result of a broad desk-study of current methodologies for assessing the needs of support in the transitional period towards independent life of people with disabilities.
The reviewed methodological materials include both methods and tools used by the partners in the project, and methods and tools used in different informational sources (books, manuals, presentations, online materials, etc.) Most documents that were used in the research are presented in the Informational table. It includes a short introduction of authors, the source of information, the contents, and the effect on policies (Appendix 1. Informational Table).
The presented documents may be used by all stakeholders in the process of de-institutionalization and adult training. The Informational table will be enriched and popularized as part of the project so that it can contribute to the general knowledge of the partners and their networks, engaged in the field of de-institutionalization and adult training (at methodical and practical level, and policy-making level).
The methodology is directly related with the goals of the project as follows:
- To contribute to the lifelong learning opportunities and the social integration of people with disabilities through training of adults and community training: by assessment of the current needs of training the independent life resources of people with disabilities and their re-formulation in educational purposes and goals.
- To unite the efforts and of educational institutions in the local community with the purposes of establishing of curricula and the adaption thereof in support of their role in inclusion of people with disabilities: by increasing the understanding of the necessity of a personality-oriented training approach for the development of individual skills, in which the person with disability is a key figure.
- To send a message to the institutional culture of organization and to optimize their support for overall integration of people with disabilities in the community: by considering people with disabilities as “experts with experiences” (people with experience in the specific disability or in support of services), who can support or train other people.
- European and national context of de-institutionalization and training of adults with disabilities
De-institutionalization of people with disabilities is a common goal and a complex problem for the whole Europe. Countries are at a different stage of the development of the process; this includes the partners in the project. In some regions, France and Finland included, people with disabilities are not accommodated into institutions, but there is the need of further development and cooperation between activities for social inclusions and the transition towards independent life in the community. In other regions, including Bulgaria and Ireland, the process of de-institutionalization is just beginning and requires systematic approach.
At the same time, all countries recognize the skills for independent life as a key factor for successful de-institutionalization. Independent life includes knowledge and skills that a person needs to guide his/her life at home and within the community. Despite some differences in the definition of these skills among different groups, they are similar in essence, because they were defined according to the main fields of life: physical and spiritual well-being; educational and professional functioning; mobility; self-care; household; communication and interaction with others; social functioning and intimacy; emotional condition and financial status, etc.
In this context, the skills for independent life include a complex of skills, which can be grouped into flexible categories. Categories of skills for independent like, used in social practice, are most often the following:
- Self-care, health, and safety: skills for hygiene and care for the body, the inhabited space, and skills for healthy lifestyle.
- Household skills: competency to run the household, such as cleaning, laundering and cooking, casual repairs, but including the general organization of work.
- Cognitive competencies: skills for understanding the things surrounding the individual (time, money, symbols, sizes, appliances, planning, foresight of consequences).
- Social skills: skills for orientation and organization of the surroundings (travels, orientation in town and neighborhood, working with money, leisure activities).
- Interaction with others: skills for adequate communication with others; skills for establishing and maintaining connections and networks; standing up for own interests while respecting the interests of others.
- Self-identification and self-development: combination of skills and knowledge of personal strengths and weaknesses; ability to set goals and make choices; skills for interaction with others in a way that respects personal rights and the rights of others.
The partners in the project use different tools to evaluate the needs and to plan the support of people with disabilities. However, they share the common European vision for de-institutionalization and support for social inclusion by developing the skills for independent life and establishing an accessible and inclusive environment.
Some of the tools are described here, while the broader spectrum of relevant documents is included in Appendix 1.
|Stewarts Care (Ireland)||– Supports Intensity Scale, Thompson et al, 2004
– Service User Strengths and Supports Inventory (SUSSI Version S)
– Assessment of Motor and Process Skills (Fisher A., Bernspång, B., 1995)
– Pathways to Independence Checklists of Self-Help Personal and Social Skills, compiled by D. Jeffree and S. Cheseldine (1998)
|KVPS – Service Foundation for People with an Intellectual
|– This is how I do – Person-centered tool for describing support needs, KVPS
– Minun suunnitelmani”, KVPS and FAIDD
– ”Toimi”, FAIDD
– ”Supports Intensity Scale”, AAIDD
|Centre de la Gabrielle – France||1- Food behavior and habits questionnaires based on PNNS guidelines
2- Nutritional status based on biometrics and nutritional records and patient medical records (Dr Yan Manh’s CdG sources)
3- Physical activities and fitness capabilities appraisal used by Dr Yan Manh at CdG
|Institute for Social Services in the Community (Bulgaria)||– Adapted variant of the INVRA methodology|
- Goals and contents of the methodology
This methodology presents the principles and tools for assesing the current training needs of people with disabilities, who are about to leave institutional care or resident services, or who are in a period of transition to an independent life.
The methodology describes the process of quality, informal (not standardized) assessment through the implementation of a tool for analysis and self-analysis of the skills for independent life and the needs of training and further development of those skills for individuals with disabilities.
The methodology will also help the preparation of the training planned as part of the independent life project:
- Training of educators, including educators with disabilities. In Bulgaria (November – December 2016) and in Ireland (January – February 2017)
- Training of two groups of 12 individual with disabilities in Bulgaria and Ireland (March-April 2017)
The methodology is an open document and may be integrated in other formal or informal tools for assessing the resources and functional needs for support for independent life, with which specialists and providers of social services work: IQ tests, achievement tests, tests for interests and career development, direct observation, analysis of curricula, analysis of the environment, etc.
The methodology provides a general theoretical network and principles for support in relation to the transition to independent life in the target group, the participants, and the process of preparation, implementation, and analysis of results of the conducted assessment. Each team may be flexible in implementing the strategy, according to the profile of people with disabilities and the profile of helpers.
2.1. Theoretical framework and principles
The methodology is based on the understanding that each person goes through periods of transition in his/her life cycle. One of the most important of these periods is the transition towards independent life. This period is of special importance for people with disabilities, because it defines the needs and resources, which contribute to the development, activity, and independence of the person.
The theoretical framework of the methodology is based on positive psychology (which focuses on the strengths of the person, and on the bio-psycho-social approach (which regards personality as a combination of individually developing characteristics that interact with the social environment and its barriers and resources).
The modern approach towards disability surpasses the medical approach of focusing on the health problem and its treatment by placing the focus on the interaction between the person and the environment as an indicator of the quality of life and as a direction for the development of the public surroundings.
|“A life of quality is a shared life…”
….Disabilities (as well as chronic illnesses and age) are often related to problems with participation in society. Individuals and their families are in risk of exclusion of various activities and opportunities, which are naturally accessible for others. The concept of quality of life takes access and participation of all individuals to people, places, and resources as a key indicator for assessment of the quality and satisfaction of life.
R. L. Schalo, M. An.V. Alonso, David L. Braddock
Handbook on Quality of Life for Human Service Practitioners, 2002
|“…Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others“
Preamble, UN Convention on the Rights of Persons with Disabilities (UNCRPD)
|“Disabilities” is an umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.
Enable website of the World Health Organization (WHO)
The principles shared in the methodology are:
– The individual with disability is the key figure in the process of research, planning, and providing support for development and quality of life. The individual is also the source of authentic information about him/her, and is an “experienced expert” on his/her current condition and the environment he/she inhabits. He/she is an expert with experience to travel, communicate, study, stand his/her ground, create friendships, overcome difficulties, and dream.
– The individual with disability develops optimally in a normal, natural environment: at home, school, workplace, in the community. Each activity, including the assessment of needs and training, are performed in the natural environment of the individual.
– Focus on the strengths, skills, and experience of the individual. Both the assessment of needs and the continuing education will be based on the strengths and achievements of participants by finding, strengthening, and transferring them towards other fields of development.
– Participation in personal network. The “Personal Network” includes not only the supporting relatives and specialists, but also friends, neighbors; people who contribute to the pleasant and complete life of a person. The personal network plays a crucial role in the quality of life of an individual. Representatives of the personal network take part in the assessment of needs and share their ideas for the skills and development of the person with disability.
– The assessment of needs of training and the training itself are a tool for self-knowledge and self-respect. The participation of individuals with disabilities in the assessment of training needs and the subsequent training in independent life is recognized as a positive, significant, and strengthening process for self-respect. The motivation, the activity, and its results are used within the context of the project in order to develop and use tools for training of adults with the purpose of de-institutionalization, and within the context of real support of people with disabilities by their supporters and personal network.
– The assessment of needs, the independent life training, and the other tools for research and planning of support help the person with disability answer the following questions:
- Who am I?
- What are my talents and interests?
- What do I want from my life; now and in the future?
- What challenges of life can I handle now?
- What are the main barriers to what I want to achieve at school, work, and the municipality?
- What steps do I have to make in order to achieve what I want now and in the future?
These questions and their individual answers determine the goals of each assessment, training, and support in the community.
2.2. Target Group
The target group for the assessment of needs for training is people with disabilities in the process of transitioning into independent life in the community (over 18 years). They participate actively in the process by analyzing their skills by themselves and through structured self-assessment and sharing of additional information. Thus, they not only present their strengths and areas for development, but also facilitate planning their role in the training (as trainers and trainees). They also prepare for different forms of active participation in the training (as presenters, sharers, observers, providers of ideas, explorers, etc.)
Two groups of 12 people with disabilities take part in the assessment (one group from Bulgarian and one from Ireland). Supporting specialists (social worker, psychologist, etc.) also take part in the assessment. They support individuals with disabilities in developing their skills for independent life. The selection of each supporting individual for participation in the assessment is performed with the active participation of each evaluated individual.
2.4. Preparation of the assessment
At the preliminary meeting, people with disabilities are introduced to the purposes of the project, its activities, and participants. They are also introduced to the purposes and the process of assessment of their skills for independent life and the expected results.
They know that their opinion and self-assessment are the most important for understanding what they can do very well and for what they need more practice either alone or with support, so that they can live independently and completely. They are informed that there are no right and wrong answers; each answer is important.
They fill a consent form, which includes a description of the assessment and their agreement to participate.
(Appendix 2. Consent form with the project summary in an accessible language)
2.5. Doing the assessment
The assessment of training needs is performed in the natural environment of the individual and disability: in the institutionalized care or community service, in their home, etc. This takes place in a calm environment, which makes it clear that the assessment is not a test but a story of the person for his/her strengths, interests, and goals.
The assessment takes approximately 40 minutes and may be interrupted so that the individual can feel well and concentrated.
The assessment is performed with the support of a representative of the project team and/or a supporting person in order to achieve calm environment, trust, free communication, and positive experience.
The assessment includes several tools, which are reviewed together with the individual with disability and the supporting specialist in the form of individual interview depending on the abilities and wished of the respondent. The purpose of different tools is to collect current, quality, and authentic information about the individual with disability, which can help his/her in the process of self-knowledge and self-respect, and in the subsequent training. It can also facilitate the work of the supporting team.
The assessment tools include:
- Personal information about the individual with disability
The tool is completed by the researched of the project with the help of the supporting individual and/or the respondent himself/herself (Appendix 3).
- Who am I? General picture of the strengths and areas for development
The tool is used by the respondent with disability. He/she tells about or draws his/her strengths and difficulties (Appendix 4).
- Self-assessment checklist for independent living skills
The tool is used by the individual with disability, who marks the level of development of his/her independent living skills (Appendix 5). The opinion of the respondent is of special important; even in cases where a supporting individual is present and has a different opinion.
- Additional tool for assessment of independent living skills
The tool may be used by the supporting individual: service specialist, relative, other important person, who has first-hand knowledge of the resources of the person with disability and supports his/her development (Appendix 6). The tool is more detailed in terms of categories of independent living skills in comparison with the Self-assessment Checklist.
Its purpose is to plan a subsequent balances and sustainable work with the individual with disability. Within the project research and training goals it could be used by the project partners for provision of additional information about the level of independent living skills development of the potential training participants.
2.6. Feedback and assessment results
At the end of the assessment, the respondent is encouraged to give feedback for the easy and difficult parts of the assessment.
The team representative shows a positive reaction on the activity of the individual as an explorer of his/her strengths; pays attention to the self-knowledge achieved (including difficulties), and the benefits of subsequent education.
Results from training needs assessment will be analyzed and uses on several levels:
- Formulation of independent life training purposes and the roles, in which each participant can develop his/her skills (within the project);
- Developing subjects for a manual for the independent life training (within the project);
- Integrating the results of participants in individual support planes and the in the work of supporting specialists and the personal network (within the support and services used by individuals with disabilities);
- Integrating the results in the activities for support and transition into independent life of each person with disability (within the actual steps of individuals with disabilities towards an independent life).
The assessment remains in the project file. Individual tools may be copied/pictured and used by people with disabilities and their supporters as correct image of their skills for independent life and purposes for development.