Dimitra Nellopoulou, s4386787
MSc Deafblindness
Department of Inclusive and Special Needs Education
University of Groningen
Supervisor:
Dr. Marja Cantell
Second evaluator:
Dr. Monica Lopez-Lopez
13 July, 2021
Total number of words: 11.323
Acknowledgements
I would like to thank the following people for helping and supporting me with this research project.
First of all, I would like to express my sincere gratitude to my primary supervisor, Dr. Marja Cantell, whose guidance, constructive advice, ingenious suggestions and feedback throughout this project was invaluable. Her consistent support and encouragement motivated me to sharpen my thinking and continuously improve my work.
I also wish to thank all the academic professionals of the Master’s program of Deafblindness of the University of Groningen for helping me expanding my horizons and deepen my knowledge on deafblindness. I would particularly like to single out the coordinator of this Master’s program, Dr. Saskia Damen. Her advice and overall insights in this field have made this an inspiring experience for me.
Despite the fact that due to the ongoing COVID-19 restrictions, I have not been able to meet my student colleagues in the MSc Deafblindness Degree Program in person, I want to thank them, as it has been encouraging to know that we are all working for the same goal and that we can contact each other for any questions or concerns.
The completion of this research project would not have been possible without the support of two professionals involved in the field of deafblindness in Greece, Maria Zeza and Froso Zafiri. Thank for the wonderful collaboration, the insightful conversations and the assistance in contacting the participants of this research.
I cannot begin to express my thanks to the participants of this research project, who offered me their time, shared their knowledge and personal perspective, and allowed me to gain access to the current situation in the field of deafblindness in Greece through their own experience.
In addition, I would like to thank my family for
their wise counsel and sympathetic ear. They were always there for me. Finally,
I would like to thank my friends whose encouragement and stimulating
discussions helped me keep going. Special thanks to my friend, Odysseas, for the
technical support regarding the transcription of the interviews and the use of
Atlas.ti software. His patient support and helpful contributions were of the
utmost importance.
Abstract
The present survey attempts to gain insight into the supportive services that are available for people with Congenital Deafblindness (CDB) in Greece as well as investigate awareness of CDB among three groups to be interviewed in Greece: families of people with CDB (n = 7), educational professionals working with students with CDB (n = 8), and academics in the field of Special Education (n = 6). A qualitative research method was used: data were collected through semi-structured interviews and they were analyzed by using Atlas.ti software. The results demonstrate that there is currently a general lack of awareness of CDB, inadequate support services for people with CDB, as well as no proper training available in CDB in Greece. Even though the findings of this study are mainly in line with other studies regarding other special needs populations in Greece, it is not applicable or sufficient for the complex needs of people with CDB. Interview participants offered plenty of suggestions for the improvement of the current situation, such as informing and guiding families of people with CDB about raising a child with CDB and the available support services, offering psychological support to all the family members, and upgrading the education options of people with CDB through the provision of early intervention services to children with CDB as well as through specialized training to educational professionals. In conclusion, the collaboration among specialized professionals and diagnostic centers (KESY), the creation of public centers that offer early intervention services and the funding of the PanHellenic Association of DB was suggested. In terms of future research directions, emancipatory and participatory studies would be useful as they would include the voice of people with CDB and their families. Their contribution in the formulation of the research would assist in studying subjects that are significant to them, and that would bring more awareness, training and services of CDB in the Greek context.
Keywords: Congenital Deafblindness; Support services; Awareness; Special needs; Interview
Introduction
The purpose of the present investigation is to find out about awareness and perceptions of congenital deafblindness (CDB) in Greece, as well as about available support services from three perspectives: family members of people with CDB, educational professionals who work with students with CDB and academics in the field of special education.
Deafblindness (DB)
Deafblindness (DB) is a distinct disability that constitutes between 0,2% and 2% of the global population (World Federation of the Deafblind, 2019). According to the Nordic definition, DB is defined as a dual sensory impairment that combines varying degrees of hearing and vision deficiency. People with DB need specialized support services, environmental adjustments and/or technological aids to be able to fully participate in society (Bendixen et al., 2020). There is no complete unanimity on the definition of Congenital DB (CDB), as some experts claim that people with CDB are those who were born DB (Dammeyer, 2009) or acquired DB before two years of age (Guthrie et al., 2011), while others suggest that people with CDB are the people who acquired DB before language acquisition (Larsen et al., 2014).
Support Services
While the characteristics of people with DB are common worldwide, the discretionary service and support adequacy can differ regionally (Kyzar, 2010). A Greek master’s thesis investigating the needs of parents of children with disabilities included ninety family members of people with disabilities in Greece. The Family Needs Survey (Bailey & Simeonsson, 1988) was applied and the results suggested that there was a lack of supportive facilities in the country and parents were not satisfied with the available support services (Hatzigeorgiadou, 2009). Although Hatzigeorgiadou’s research offers an insight into the situation in Greece eleven years ago, it may not apply to the present situation in Greece. Therefore, it is important to carry out a new survey considering CDB in Greece.
To start with, an initial search using Google Scholar, ResearchGate and SmartCat revealed that it is hard to locate published studies on families with a child with CDB in Greece. Nevertheless, it was feasible to locate Greek studies on families with a child with other kinds of disabilities. In one particular thesis that consists of an overview of the support services available to a special needs group included interviews of twenty-two mothers, and the Family Support Scale (Dunst, Jenkins & Trivette, 1984) was also administered. Similarly to the master’s research of Hatzigeorgiadou (2009), it was found that mothers were not satisfied with the majority of the support services that the Greek government offered concerning access to information, psychological and financial support. However, in another Greek student research mothers were contented with the information that special education teachers, principals, social workers, and psychologists of the special school offered them (Valiakou, 2012).
The effect of a member with disability in a family
International research suggests that having a family member with a disability living at home usually causes many changes, concerns, and also stress to the family as soon as a diagnosis is given (Simcock, 2017). Parents and caregivers can experience feelings of uncertainty about the child’s health, social life, education, future in general, as well as the feeling of incompetence due to the financial burdens and the child’s increased care needs to be entailed by their disability (Barnett, Clements, Kaplan-Estrin, & Fialka, 2003; Simcock, 2017). However, living with a family member with a disability can also be seen to provide positive effects. In the long run, family members learn in practice about special needs, and during the process of acceptance, they can learn about themselves in a form of personal growth, which can also result in stronger family bonds (Correa-Torres & Bowen, 2016). Although there has been research conducted on the necessary support for a family with a member with a disability in general, there is scarce research about the support for a family with a member with DB (Correa-Torres & Bowen, 2016).
A fundamental need reported by families with members with DB is to receive information and access support services for their children (Kyzar & Summers, 2014). Similarly, the above mentioned Greek research indicated that parents with an offspring with disability in Greece not only need more information about the services but also efficient services of diagnosis and guidance (Hatzigeorgiadou, 2009). This is essential, as the provision of early support services diminishes the stress that a family with a member with CDB experiences (Correa-Torres & Bowen, 2016). The present research aims to investigate how this is currently available in Greece.
Diagnostic process of special needs education in Greece
According to the Greek draft law 4547/2018 (Act 102Α) in Greece there are 42 Educational and Counselling Support Centers (KESY), which consist of a five-member interdisciplinary team: 1) a Special Education teacher, 2) a child psychiatrist or a paediatrician with specialization in paediatric neurology or a neurologist with specialization in paediatric neurology, 3) a social worker, 4) a psychologist and 5) a speech therapist. When it is necessary, the KESY can require the participation of an occupational therapist and/or a member of the Special Educational Staff. The KESY aims to not only accord a diagnosis to students with special needs between the age of 4 and 22, but also inform and raise awareness among teachers, parents and society.
The diagnosis defines and describes the difficulties of a person as well as suggests the most suited support for each individual. Also, it includes a proposal for the most appropriate school unit for the student and an Individualized Educational Program (IEP) to assist the school teacher. The IEP specifies the educational goals for the student. The services of the KESY are provided free of cost and the file of each student is accessible only to the parents and the educational school staff. To get access to the KESY services, parents should communicate with the KESY who will guide them regarding the documents that parents need to provide in the appointment. Before the appointment with the KESY, it is suggested that the school teacher applies a short-term intervention which will also be presented to the KESY team (Unified Regulation for the operation of the Educational and Counseling Support Centers (KESY) and more specifically duties and responsibilities of their staff Act, 2018).
PanHellenic Association of DB- ILIOTROPIO
To support people with DB, in 1992, a group of parents with children with DB created the PanHellenic Association of DB in Greece named “ILIOTROPIO”. The association is also supported by professionals-volunteers and friends, and is the only organisation in Greece concerning DB. The PanHellenic Association aims the recognition of DB as a unique disability, the establishment of facilities for the education and rehabilitation of children and adults with DB, and the specialized training of professionals. Additional actions of the PanHellenic Association of DB until today are: scooting for people with DB, informing the Greek Ministry of Education about matters regarding DB and requests, raising awareness in Greece, offering support to families with a member with DB, organising conferences and seminars in collaboration with European and international organizations, visits of the members of the PanHellenic Association to international institutions for DB to upgrade their knowledge, support of the children with DB to participate in summer camps and therapeutic horse riding. The major goal of the PanHellenic Association is the creation of schools, institutes and support services staffed with specialized professionals (PanHellenic Association of Deafblindness “ILIOTROPIO”, 2019).
Families of people with CDB
The present survey intends to research the experiences of families, more specifically mothers and siblings, affiliated with the support available for their children with CDB in Greece. Research suggests that the care of children is usually mainly assigned to mothers (Ranehov & Håkansson, 2018). Furthermore, it is not uncommon for a mother of a child with a disability to choose to leave her work so she can dedicate herself to her child’s care, even if that has major financial consequences on the family (McCann, Bull & Winzenberg, 2012). As a result, a mother of a child with a disability often experiences stress associated with economic and social factors (Yagmurlu, Yavuz & Sen, 2015). The current research aims to examine if mothers of children with CDB in Greece experience such difficulties. And if so, are there any supportive measures to assist with the raise of a child with CDB?
Additionally, an important aspect of the family of a DB individual is the sibling(s), who most of the time tend to behave in a helping and playful way towards the DB person, but sometimes are distant or choose not to interact with their DB sister or brother (Heller, Gallgher, & Fredrick, 1999), usually because of communication difficulties (Correa-Torres & Bowen, 2016). To encourage more interactions between the siblings of a child with CDB, research suggests that professionals ought to provide special support to siblings as well as parents (Giallo & Gavidia- Payne, 2006).
Educational professionals working with people with CDB
The provision of the needed support by professionals presupposes a specific kind of knowledge and skill base (Correa- Torres, Bowen & Furze, 2020). Over the years, international research indicates that professionals who provide DB education usually get specialized training via curriculum projects (Huebner Kirchner & Prickett, 1995) and long-distance educational programs (Bruce, 2007). It has been suggested that teachers should own a national teacher certification in DB (Braha et al, 2009) or a specific certification in the field (Correa- Torres et al., 2020) to ensure that they are qualified to collaborate with people with DB. According to the Greek draft law established in 2008, professionals working with the DB in Greece are required to obtain a certificate of the Braille and a certification of the Greek Sign Language (Special education and Education of people with disability or special educational needs Act, 2008).
In Greece Special Education professionals can rely on the curriculum for students with DB (2004). The curriculum includes an introduction to DB, guidelines for the teachers on the education of students with DB, curriculum for the development of the communicational skills of students with DB, and teaching methods (Ministry of National Education and Religion, 2004). Also, the “Program of measures for individualised support for students with disabilities or/and special educational needs for the improvement of academic and social development through the utilization of technology and digital educational material. The differentiation of teaching for students with multiple disabilities” (Institute of Educational Policy, 2015) includes a chapter for DB and a case-study for differentiation of teaching for a student with DB. The present research will investigate the education and the training of the professionals who teach students with CDB in Greece, as well as their opinion about the adequacy of the curriculum, their current training needs and their vision for the future CDB training curriculum in Greece.
Academics in the field of Special Education
The collaboration between universities and professionals is considered efficient (Bruce, 2007) since it is common knowledge that universities worldwide provide detailed and specific knowledge that not only will empower their postsecondary students to be innovative but will also equip them with the required skills to be able to improve the quality of life of groups through their work (Shaker, 2016). Similarly, a special education certificate indicates the specialized training and skills attained by the graduate student (Gilmour, 2020). Yet, the needs of professionals who teach students with DB can be satisfied only by programs that are targeting the field of DB (Braha, Cooper, Irby, Montgomery & Parker, 2009). The present research will pursue to investigate the education affiliated with CDB that students of special education in Greece get and also the perspective of academics in the field of special education on how higher education in CDB could influence the current quality of support services in the country.
Research purpose- and questions
The purpose of the present survey is to gain insight into the supportive services that are available for people with CDB in Greece as well as investigate awareness of CDB among three groups to be interviewed in Greece. Specifically, this inquiry will examine the support services that mothers and siblings of children with CDB in Greece have access to and the additional services they may need. Furthermore, the present research will examine the education and the training of the educational professionals who work with students with CDB in Greece, examining their needs and suggestions. Moreover, the study will inspect how and if the higher education programs include the topic of CDB in their curricula in Greece and if/what the academics in the field of special education envision as future curriculum needs in CDB Greece. Finally, there will be an investigation into if higher education in CDB could be affiliated to the current situation (support services for CDB people and awareness of CDB) in the country according to the perspective of academics in the field of special education.
The current study within the context of Greece aims to add to the existing research base of DB and to bring awareness of the current situation of the needs of families, as well as knowledge and training of educational professionals and academics in the field of DB.
Research Questions
Among families, educational professionals and academics in the field of DB in Greece:
1. What are the available support services for people with CDB?
2. To what degree is there awareness of and training in the field of CDB?
Method
Research Design
A qualitative study using interviews was chosen to research the support services for people with CDB and the awareness of CDB in Greece. Single semi-structured interviews were considered the most suitable for this particular inquiry as this kind of method allows the researcher to get more information by asking additional questions on certain answers of the participant (Schein, 2004). Also, the particular method is ideal because single interviews allow participants to express themselves freely without being influenced by the opinions of others, a privilege that is not possible in groups (Walliman, 2006).
Participants
There were 21 participants: seven members of families with a child with CDB (four mothers and three siblings), eight professionals working with students with CDB, and six academics in the field of special education. Most of these people (n=17) lived in big cities in Greece and their perspectives imprinted the current situation in urban centers of Greece. Only four participants live in the countryside (n=2) or on an island (n=2).
To protect the anonymity of the participants their exact age will not be mentioned. Instead six age categories were formulated: “Age 1” category indicates ages between 15 and 20 years old, “Age 2” indicates ages between 21 and 30 years old, “Age 3” indicates ages between 31 and 40, “Age 4” stands for ages between 41 and 50, “Age 5” refer to ages from 51 to 60, and “Age 6” indicates above 61 years old. In the same way, there were created five categories referring to the years of experience of the professionals and the academics of Special Education programs: “Experience 1” includes one month to one year of experience, “Experience 2” refers to 2 to 5 years, “Experience 3” stand for 6 to 10 years of experience, “Experience 4” indicates 11 to 20 years, and “Experience 5” refer to above 20 years of experience.
The demographic information on the four mother participants is provided in Table 1. The majority of the mothers (3/4) were above 61 years of age and one mother was between 41 and 50 years old. Typically mothers had two children.
Table 1
The demographic information on the three sibling participants is provided in Table 2. The majority of the siblings that were interviewed were females and older to their sibling with CDB. All participants have an age difference of approximately 5 years with their sibling with CDB.
Table 2
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The eight professionals shared information on their own education and training backgrounds. The fields of their study were: 1) occupational therapy, 2) speech therapy, 3) psychology, 4) daycare for children with special needs, 5) primary education, and 6) early childhood education. The majority of them (6/8) had master’s studies in: Special Education, Autism, and Therapeutic horse riding, while two professionals did training on DB at the Helen Keller school in New York, USA for ten daysand at the Perkins School of the Blind in Boston, the USA for a year. One participant proceeded into Ph.D. studies regarding DB. All 8 of the participants participated in seminars and conferences, such as “Promoting Effective Communication for Individuals with a Vision Impairment and Multiple Disabilities” organized by Erasmus+. Four of the professionals commented that their education has been really useful for teaching people with CDB, but practical experience is the most effective training for it.
Table 3
The demographic information on the six academic participants is provided in Table 4. Five of the academics had studied Specific impairments which included mental retardation, learning disabilities, visual disability, hearing impairments/ sign language, speech and hearing sciences. There was one academic who had studied Special Education at MA level. Most of them had more than 11years of experience.
Table 4
Procedure
Before beginning of the study, the research plan was submitted as a student project to the Ethics Board of the Pedagogical and Educational Sciences at the University of Groningen.
The recruitment consisted of several phases. The researcher initially contacted the primary Special Education school for students with DB. The principal of the school offered the contact information of the PanHellenic Association of DB. The family and professional participants were contacted through the snowball effect. Families were informed about the study in October by the president of the PanHellenic Association of DB "ILIOTRIPIO". Educational professionals were informed about the study by the principal of the Special Elementary School for the Deafblind in Athens. Also, a group of academics in the field of special education were contacted through email addresses that are available on the universities’ website.
The researcher contacted the intended group of participants via telephone or email to communicate the purpose of this study to them and then email to them a consent form which included information about the study, the research questions, their rights and what participation requires from the interviewees (see Appendix A). Before the interviews, three pilot interviews were conducted to ensure the clarity of the questions. Once the researcher received the signed forms from each participant, a telephone or a videocall interview was scheduled according to what served each interviewee the best. The participants were informed about the necessity to record their answers. Also, they were reassured that their answers will be systematically transcribed. Once this process was completed, the interviews were scheduled. The participants’ rights mentioned in the consent form were that they were reassured of anonymity and confidentiality and that they had the option to withdraw their participation at any point before the final writing of the research without any consequences.
Data Collection
Semi-structured interviews were considered to be the most suitable method to serve the research’s purpose. The researcher formulated four different interview templates for the different groups of participants with approximately 10 questions and some background questions each (see Appendix B). These questions served the aims of the survey (Schein, 2004). The duration of each interview varied from 30 minutes to an hour. The questions of the semi structured interviews were in specific categories, but participants were also invited to communicate any additional thoughts related to the topic of the survey.
Analysis
The data of the interviews was analysed by using the ATLAS.ti software that can be applied to distinguish different themes and patterns (Braun & Clark, 2006; Schebesta, 2018). Firstly, the researcher familiarized herself with the data by reading the transcriptions multiple times (Creswell, 2002). Then, the researcher used ATLAS.ti to organize the data of the interviews by developing codes. During the data display phase, the material was distinguished via a thematic conceptual matrix (Miles & Huberman, 1994) to specific themes. The researcher with the assistance of the ATLAS.ti software located the data to the ideal theme or to a new category that arose after the interviews. Based on the research aim, there were five possible main themes and subcategories: 1) Available support services in Greece, 2) Awareness of CDB, 3) Training in the field of CDB, 4) Support services for families with a child with CDB, 5) Suggestions for the support services. There were additional subcategories for each theme. For instance, “Awareness of CDB” was composed of the following subcategories: awareness of medical experts, awareness of Special Education professionals, and awareness of Greek society. An external researcher with a master’s degree in social sciences read the transcribed interviews reviewed the coding and the results of the data and the interpreter agreement was 100%. The interpreter proposed new codes, but after discussion it was agreed that the proposed codes were irrelevant to the research questions of the study. In the conclusions phase, the researcher reviewed the data of each coding category and located prominent subthemes (Braun & Clark, 2006).
Results
The results are summarized based on the research questions that were incorporated into the interview questions of families, professionals and academics. There are four main sections: A. Available support services; B. Suggestions; C. Awareness; D. Training. In the end, two specific questions that were only asked from the professionals and academics are reported.
A. Available support services for people with CDB
The perspective of families.
Mothers (see Figure C1) and siblings (see Figure C2) referred to the available support services for people with CDB. All three siblings stated that they are not familiar with all the details regarding the support services for people with CDB, because their parents handled these matters of their sibling’s life. The majority of the mothers (3/4) referred to existence of the public primary Special Education School for students with DB. According to a mother, approximately 20 years of efforts were needed for the government to satisfy the request for a public kindergarten and primary Special Education school for students with DB. Also, she said that the public kindergarten for children with DB is currently in suspension due to the absence of new registrations.
Three mothers reported that their children attend a private day-care for people with vision impairments and multiple disabilities, and two of them stated that their children with CDB live in the group home that the day-care provides. On the other hand, all siblings reported that their siblings with CDB received education in a public Special Education school or a special education department for students with DB and later in a public school of Special Vocational Education and Training. One mother mentioned that her child with CDB attends a private summer camp every summer. An additional support service reported by two mothers is the transportation of their children to school.
All mothers and siblings referred to the disability allowance granted by the Greek government. Two mothers described that their children are granted two different allowances since deafblindness is not recognized as a unique disability in Greece: one for blindness and one for deafness. All mothers and two siblings expressed their dissatisfaction with the complexity of the procedure that is required for a person with CDB to get the allowance or any support service since numerous documents are required and the procedure is time-consuming and exhausting for people with CDB and their families.
Moreover, the Greek government offers diagnostic services to people with CDB. Three of the mothers narrated that they were not informed of their children’s impairments in the maternity hospital. They all visited several doctors in order to get the diagnosis. Two siblings mentioned that when their siblings were younger, there was a diagnostic committee. They described that their parents needed to hand in the necessary documents and diagnosis from the medical experts to verify the deficiencies of their child with CDB. Then, this committee decided the category of the special needs that their child was included in and the support services the child deserves. All mothers agreed that all the support services for people with CDB are offered in Athens. All mothers and two siblings agreed that the available support services for people with CDB are inadequate. In contrast, one sibling reported that the services are adequate, and s/he listed the necessary support services for people with CDB to be education and a disability allowance.
Three mothers and a sibling stated that the PanHellenic Association of DB offered guidance, information and organized sessions for people with CDB to participate in creative activities. Also, two mothers reported that they hired a person to support their mobility child’s needs and spend time with the child when they are busy. None of the above support services were offered by the government.
The perspective of professionals.
Professionals described the available support services in Greece, which include financial support from the government through a disability allowance (3/6 referred to it) and the payment of private professionals’ services (2/6 mentioned it) who offer necessary treatments to people with CDB. These services may be physiotherapy, occupational therapy, or speech therapy.
Also, according to all the professionals, in the public primary Special Education school for students with DB, pupils get everyday support from a special education teacher, a speech therapist, and an occupational therapist. All of them stated that support is also provided by a social worker as well as a psychologist, who work for multiple schools and the time they offer to each individual and the families is limited.
Two professionals mentioned the Educational and Counselling support centers (KESY) in big cities, which guide the family and the educators for the upbringing and education of the child. One professional mentioned private organizations that offer early intervention services for children with CDB in Athens and Thessaloniki, the two big cities of the country. Another support service mentioned by one professional is the recruitment of special education teachers to mainstream schools of small villages and islands to support a student with CDB. Two professionals commented that almost all the support services offered by professionals in Greece are inadequate as most of these professionals are not trained on CDB. Finally, four professionals reported that a person with CDB can get support ifs/he contacts the PanHellenic Association of DB (see Figure C3).
The perspective of academics.
Regarding the available support services for people with CDB in Greece, the majority of the academics (4/6) reported that they are not aware of them. However, they answered that there are not specialized support services for people with CDB in Greece. The available support services they mentioned were: 1) the right to work fewer years until retirement compared to a person without disabilities, 2) provision of an interpreter for people with CDB when they are in public, and 3) support services adjusted to the individual’s needs. Participant 4A who was not aware of the exact support services, but believed that they are adequate for CDB people’s needs, described the support services within the school: a student with CDB is supported by a teacher who knows the Greek sign language, a teacher who knows braille, a physiotherapist, a speech therapist, and an occupational therapist, depending on the individual’s needs.
On the other hand, two participants (2/6) reported that they are aware of the support services, which are: 1) private services that offer an assessment of the individual’s needs and interventions, 2) public primary Special Education school for students with DB. One of them mentioned that the support services for people with CDB are adequate and improvements to them are not necessary, while the other participant suggested the opposite.
The academics who are not aware of the support services stated that the reasons they are not informed on this matter are the absence of a formal organization and website for DB in Greece and the fact that people with CDB are supported only in the capital city of Greece. Participant 4A referred to some “positive efforts” concerning DB in 2004 when a curriculum that provided guidelines for teachers who teach students with DB was created (see Figure C4).
B. Available services for families of people with CDB
The perspective of mothers.
Mothers of people with CDB that were interviewed agreed that the main carer of the child with CDB is themselves, the mother of the family. All mothers agreed that (apart from the support and guidance of the PanHellenic Association of DB) there are not any available support services for the parents of a child with CDB. One mother commented that nowadays there is limited support from the public primary Special Education school for students with DB. Professionals who work at the Special Education school offer their advice to the parents (see figure C5).
The perspective of siblings.
All siblings who were interviewed reported that they are not aware of any support services for siblings of people with CDB. All of them commented that there were not any support services for their parents either.
Suggestions for the support services
The perspective of families.
Mothers (see Figure C6) and siblings (see Figure C7) of people with CDB suggested certain support services that people with CDB and their families would need. Mothers’ suggestions regarding medical services were: 1) medical services provided free of cost to people with CDB, 2) medical experts specialized in CDB, and 3) creation of a public service that would be responsible of contacting and supporting people with CDB as soon as medical experts diagnose the dual sensory deficit. One sibling added that there is a need for financing research on medical aspects of CDB in Greece. The sibling explained that families of people with CDB not only need initial information on CDB, but also regular updating of this information with new findings regarding the sensory impairments of people with CDB.
One sibling referred to the need for a better quality of education for people with CDB with suitable facilities, means in the school units, and professionals trained to teach people with CDB. One mother and one sibling also reported the need for public centers that offer early intervention services to children with CDB. One mother suggested the creation of rehabilitation centers where people with CDB could live happily and get the appropriate support when their family will not be able to take care of them anymore. One sibling reported the need for centers where people with CDB could spend their time creatively and develop their social skills.
Two mothers and all the siblings reported the need for a social worker, while three mothers and all the siblings suggested support from a psychologist for the parents. Moreover, two mothers and all siblings mentioned the need for a support service that would guide the parents through all the steps that they have to follow as parents of a child with CDB. All siblings and one mother suggested that the government should offer to families with a child with CDB the option to request assistance of a support worker from the Greek national health care service. Moreover, one mother suggested the creation of a support center specialized in DB, while one sibling stated that there is a need for more professionals who provide support services to people with CDB and that support services should be offered in the personal living place of each person with CDB as it is exhausting for a person with CDB and the family to visit all the different offices that offer support services. One sibling said that there is a need for support concerning the occupation of people with CDB and that the government should reserve a number of employment positions for people with CDB.
All mothers and siblings agreed that there is a need for educating the Greek society about CDB and disabilities in general so that people with disabilities can be more fully included in the Greek society. According to the mothers, Greek people should get familiar with disabilities and CDB from a young age, learn to respect all people’s needs and get trained on how to communicate with a person with CDB. One mother said: “The education of society about disabilities would not only benefit the lives of people with disabilities, but also the lives of people without disabilities. Society has so many things to learn from people with disabilities”.
The perspective of professionals.
The professionals suggested some alterations to the existing support services for people with CDB. Three professionals stated that the diagnostic center (KESY) should be responsible for informing and guiding the parents who have a child with CDB about the available support services, while two other professionals commented that access to the information about the support services should be easier for the families with a child with CDB. Other suggested alterations to the diagnostic centers (KESY) of the country are: 1) hiring of specialized psychologists, 2) cooperation of the KESY with specialized professionals to assist the diagnostic procedure when an individual with CDB occurs, and 3) the enactment of a novel law that obliges the doctors who diagnose the sensory deficits of a person with CDB to inform the social services.
At the same time, professionals proposed modifications to the available early intervention services for children with CDB. Three professionals reported that there is a need for a higher quality, while two professionals also suggested the creation of public early intervention services. One professional suggested the replacement of schools with boarding schools where people with CDB could develop skills that are truly useful to them in everyday life, such as socialization, eating habits, self-care, and autonomy.
Also, three professionals stated that there is a need for extending support services covering the whole country and not only in Athens. One professional suggested the establishment of school departments for students with DB within Special Education school units in all the big cities. Finally, another professional said that the government needs to recruit specialized professionals to support the education of people with CDB in small villages or islands not only at school related skills but also in daily living skills.
Other suggested alterations were: 1) the recruitment of larger number of professionals to support all people with CDB 2) the mandatory cooperation among private professionals who separately work with people with CDB. Five professionals reported that parents do not get any support and that it is important to create support services- individualized and in teams- for the families of people with CDB (see Figure C8).
The perspective of academics.
Participant 4D was the only one who mentioned to be aware of the available support services for people with CDB in Greece and stated that additions or alterations to them are unnecessary. The rest five participants suggested several alterations to the services: 1) the creation of early intervention programs (2/5 participants suggested that), 2) further education to professionals who offer early intervention services, 3) formulation of an official center for DB, 4) counselling for the parents, 5) free seminars for the family and friends of a CDB person, 6) adjustments to facilitate access to communication, 7) health services and culture for people with CDB, 8) support in secondary and higher education, 9) translation of books, maps, etc. into the Braille language. In addition, an academic drew attention to the absence of legislation regarding haptic alphabet and language, which consists a barrier for the development of the education and the support services of people with CDB (see Figure C9).C. Awareness
The perspective of families.
All mothers (see Figure C10) and siblings (see Figure C11) agreed that Greek society at large is not aware of CDB. Two of the mothers commented that society is not properly educated regarding people with disabilities in general and maybe Greece has not developed a modern, cultured society yet when it comes to showing people with disabilities the appropriate respect. Also, all mothers and one sibling agreed that the majority of the Special Education professionals in Greece are not adequately aware of CDB, whilst another sibling reported the opposite. The third sibling explained that some professionals are aware of CDB and others are not. Mothers’ views on the awareness of medical experts on CDB were divided. Two mothers mentioned that medical experts are aware of CDB, while the other two stated that medical experts are not aware of CDB. All siblings agreed that medical experts are aware of CDB.
Two mothers commented that so far the only means that raise awareness on CDB in Greece are the website and social media accounts of the PanHellenic Association of DB. Also, some years ago a Greek TV channel made a tribute to the PanHellenic Association of DB. One sibling commented that the members of the PanHellenic Association of DB are the experts in CDB and this organization is the leading example of knowledge and support in Greece.
The perspective of professionals.
Regarding the degree of awareness of CDB in Greece all professionals agreed that Greek society at large is not aware of CDB. The interviewed professionals reported that in general Special Education professionals are only aware of the existence of CDB, but they do not know more information about it.
Three participants referred to the PanHellenic Association of DB that almost every year organizes seminars and conferences related to DB to raise awareness. One professional reported that the Special Education school for people with DB annually sends information leaflets to the medical experts to raise awareness and invite them to contact the primary Special Education school for students with DB if they ever get a person with DB to be examined.
The answers of the professionals on the awareness of medical experts varied. Four professionals reported that medical experts are aware of CDB, while two professionals stated that they are not aware of CDB. One professional said that ophthalmologists are aware of DB, but otolaryngologists are not. One professional did not express an opinion on that matter (see Figure C13).
The perspective of academics.
On the matter of awareness and available information about CDB in Greece, all the academics agreed that there is little or no information. Two participants stated that there is not a formal organization for DB in Greece and a website to provide general as well as specialized information about DB.
The opinions on the subject of awareness of CDB between academics of special education in Greece divided the participants as three of them claimed that there is no awareness while the other three believe that academics are aware of CDB, or at least they are educated about it by studying relevant literature. One participant said that academics in Greece do not have any working experience in the education of people with CDB nor have they researched the topic (see Figure C14).
D. Training in the field of CDB
The perspective of families.
All mothers (see Figure C15) as well as the majority of the siblings (2/3) (see Figure C16) thought that Special Education professionals are not trained on CDB and Special Education programs do not include CDB. One sibling stated that Special Education professionals are trained in CDB. One mother stated that Special Education professionals who are hired to teach students with CDB get trained through their experience by working with individuals with CDB.
One mother reported that she does not know any Greek educational programs in CDB and that is why professionals are not specialized in CDB. One mother described that there were some seminars about DB, such as “The education of the deafblind child” which was funded by the Center for Education and Rehabilitation for the blind. Three mothers agreed that the PanHellenic Association of DB is accomplishing great achievements in training professionals on DB through organizing seminars once a year, such as “Theoretical and practical approaches in the field of DB” and “Seminars for informing about DB” for special education professionals and people who want to learn more about DB.
All siblings and one mother agreed that medical experts are trained in CDB from a medical point of view. One mother reported that there are equal chances of meeting a medical expert with or without training in the field of DB. Two mothers commented that in their experience medical experts are not trained on how to approach a patient with CDB who needs to be examined.
The perspective of professionals.
Professionals answered some questions concerning the degree of training in the field of CDB. The majority of them (7/8) reported that Special Education professionals are not trained on CDB at all, while one participant said that the Special Education programs do not offer adequate education on CDB. Two participants mentioned that only professionals who as students did their internship at a Special Education School and worked with students with DB are trained on CDB. One participant commented that he/she is not aware of an educational program on DB. Also, two participants stated that it is essential for a professional who works on CDB to be widely trained on a range of disabilities because a student with CDB usually has accompanying disabilities as well. All professionals agreed that there are seminars and conferences free of cost for professionals to enrich their knowledge on CDB, such as conferences that the PanHellenic Association for DB organises.
One professional said that it is really rare for a professional to hold both a Greek sign language degree and a Braille certification. Usually professionals- special education teachers and therapists- hold one of the two degrees which are required by law in order to work for the Special Education school for students with DB. The principal of the primary Special Education school for students with DB often requested the Ministry of Education to recruit professionals even though they did not meet the standards (see Figure C17).
The perspective of academics.
The answers of the academics regarding training in the field of CDB in Greece varied. Three of the participants reported that DB is not included in the curriculum, while the other half claimed that it is. At the same time, most of the participants (5/6) reported that there is not a university course or program about CDB in Greece. However, half of the participants referred to two other academics who they think are teaching about DB.
Also, none of the participants clearly stated that they are teaching about CDB, but four of them reported that they make a reference to CDB during another optional course, or spend 1-2 sessions to train the Special Education students in making the necessary adjustments for a student with CDB, such as utilizing haptic materials in their teaching, and understanding the communication difficulties. Only one academic claimed to deepening into CDB and teaching about communication, gross and fine motor skills, active tactile dimension, assistive technology, and self-service in people with CDB during another optional course. To teach the above the academics mainly discuss with the students about CDB, they make a PPT presentation about it, they may present a case study or a video and in some cases, an actual deafblind person attended the class. Also, a participant said that the students have to submit assignments on CDB, and during the class, they use assessment tools for people with CDB, such as the Communication Matrix (Rowland et al).
In addition, only one participant reported that Special Education students certainly have internships and come in touch with people with CDB, while the rest of them said that there is no control over the disabilities each student will meet during his/her internship or an expectation of what the internship needs to provide them. Finally, most of the academics (5/6) reported that higher education does not contribute to awareness of DB in Greece (see Figure C18).
E. Results regarding needs reported by professionals
Professionals expressed their needs as professionals who work with students with CDB in Greece, which were: 1) further education through a master’s program or training and/or seminars about CDB, 2) financial support for visits to Special Education schools with students with CDB in other countries, 3) materials within the school for the education of the DB students, such as an educational kitchen, technology, consumables, materials that offer sensory stimuli, as well as interactive whiteboards so that they can offer a holistic education adjusted to the abilities and needs of their students, 4) specialized school facilities. The school should be accessible to everybody and should accommodated to the needs of those with DB, there should be enough classrooms for all the different professionals, wide hallways, a sensory integration room, a gym, a pool, a garden, a place to do horse riding, and a laboratory to work pre-professional skills. Also, 5) a library with updated professional literature.
Professionals stated they have some needs concerning human resources. Specifically, the majority of them (6/8) stated that educational units where students with CDB attend need all the different specialties and professionals in order to be able to offer a complete education and support. Two participants commented that the staff of the school should have permanent work contracts and not be replaced every year. Three professionals who work at the public Special Education school for students with DB stated that since professionals who are assigned to work at this school are not trained in CDB, the most experienced coworkers support and guide the new professionals for the first months. When the government assigns new therapists to work at the school every year, it adds a challenge to this school’s work. Also, one professional reported that there is a need for communication and collaboration between schools for students with DB from all over the world. Thus, they could exchange ideas and help each other improve their services (see Figure 19).
F. Results concerning CDB in the future curriculum reported by academics
All of the academics suggested that a course about DB would be useful and the majority of them (4/6) reported that a specialized academic would be essential to teach this course. Only two participants said that they were hesitant on that matter, because, as they explained, teaching about DB requires wide knowledge on a variety of disabilities since DB usually coexists with other impairments. In addition, one academic suggested that a course about DB would be best suited in a Master’s program. Finally, the participants stated that for them to teach about CDB they would need further education, personal experience in educating people with CDB, and constant communication with an association of the DB in Greece (see Figure 20).
Discussion
The aim of this study was to find out about awareness of CDB in Greece, as well as about available support services for people with CDB and their families from three perspectives: family members of people with CDB, educational professionals who work with students with CDB and academics in the field of special education.
Available support services for people with CDB
Based on the results of the three groups, seven categories of subjects -related to available support services- to discuss were formulated.
Availability of support services.
In line with a previous study (Kyzar, 2010) there is differentiation of the support services depending on the location. The support services for people with CDB and their families in Greece seem to be offered mainly in Athens. It seems that the location of the provision of support services for people with CDB is one reason why academics are not aware of the support services for people with CDB. Since there is not a Special Education bachelor program in any of the public universities of Athens, none of the academic participants live and work in Athens, where the only special school for deafblind students in Greece is located. Thus, they do not have direct contact or access to this population. In addition, an academic explained that if a student with CDB attends a school that is not specialized for DB, then the teachers working there will not be specifically educated and prepared to support the educational needs of this student. Provided that there is only one Special School for Deafblind students in Athens, the rest of the students in Greece may not receive an adequate education.
Education and day-care.
All participants offered an insight into the available educational options for people with CDB of all ages: kindergarten, primary school, Special Vocational Education and Training, day-care, parallel support to students with CDB in mainstream schools. Professionals described the support that the public primary Special Education school for students with DB offers to pupils, but family members described the absence of the specific services. This contrast results from the fact that the children with CDB of the interviewed families did not attend the public primary Special Education school for students with DB. Thus, it can be concluded that the services that professionals described may be offered in the particular special education school, but it is not sure that all special education schools that may teach students with CDB will provide such services.
Diagnostic services.
The fact that the Special Education Kindergarten for children with DB did not have any registrations for the past years may indicate the lack of efficient guidance, diagnostic and early intervention services. This hypothesis is underpinned by the fact that the diagnostic services the KESY offers provide for people among ages of 4 to 22 years old, but there is a need for diagnosis and intervention from an earlier age. Overall these findings are in accordance with findings reported by Hatzigeorgiadou (2009). A new finding of this research is that the reason diagnostic centers (KESY) do not adequately support people with CDB may be because professionals who work there lack knowledge on CDB.
In contrary to the draft law that describes the duties of the diagnostic centers (KESY), the family interviews suggest that the centers do not inform and guide families with a child with CDB and that indicates that parents will only gain access to information and support services by personal initiative. This situation is unsustainable on many grounds. People with CDB could be deprived of the right to education and treatments because their parents are not aware of the support services or even made the wrong decisions.
Early intervention services.
The fact that early intervention services are only offered by private organizations in Athens and Thessaloniki, the two big cities of the country, confirms the lack of efficient early intervention services (Hatzigeorgiadou, 2009), as it is possible that families with a child with CDB will not live in the two big cities and/or cannot afford these services and/or are not aware of these private organizations and the significance of early intervention.
Financial support.
Contrary to the findings of Valiakou’s (2012) study, it was not found that Greek people are dissatisfied by the financial support from the government. It is interesting that one sibling believes that education and financial support is enough support service for people with CDB in Greece. Even though the two support services mentioned are fundamental, there is a chance that this sibling has never thought of the possibilities that people with CDB could have if the necessary support services, such as psychological support and support from specialized professionals, were offered to them and their families. At the same time, it is possible that the support that Greek society in general is granted from the government is so scarce that some people are contented with at least the minimum support.
Available support services that were not mentioned in previous studies are the limitation of the working years until retirement for people with CDB and the provision of an interpreter. It is not clear if the interpreter is provided by the government or the person with CDB needs to hire a professional.
PanHellenic Association of DB.
During the interviews it was consistently mentioned that the PanHellenic Association of DB provides families guidance, information, support to participate in summer-camps and creative activities (PanHellenic Association of Deafblindness “ILIOTROPIO”, 2019). In contrast to an earlier study that mentioned school as the main support for the families (Valiakou, 2012), in the interviews of the current study families of people with CDB named the PanHellenic Association of DB as their main support.
Unavailable support services.
Similarly to earlier studies (Hatzigeorgiadou, 2009; Valiakou, 2012) it was found that the majority of the available support services offered by the Greek government is inadequate. During the interviews, all mothers expressed more elements that are not provided to them rather than what is offered. Based on the interviews it can be concluded that the government is not accommodating the needs of people with CDB and their families. More particularly, parents are not offered any counselling, information about DB, the available support services. Mothers told that they are not given guidance about the most suitable medical expert to visit and the appropriate school unit for their child’s needs, which are the most urgent needs of families of people with DB according to the study of Kyzar and Summer as well (2014). Also, the lack of support services for people with CDB and the complicated access to the available support services are findings that confirm the situation from nine years earlier (Valiakou, 2012).
Several serious concerns arise from the interviews with the families, such as: Is it necessary for people with CDB to periodically prove their disability? Is it appropriate to establish such a laborious procedure for people with CDB to be granted their rights?
Available
support services for families of people with CDB
The results of this study ties well with previous studies (Ranehov & Håkansson , 2018) where mothers were reported to be the main carer of the child with CDB. The findings of the research about the support services for mothers and siblings confirm the results from 12 years earlier (Hatzigeorgiadou, 2009). The government does not provide any support services to families of people with CDB. The only available support for family members may come from the professionals who work at the public primary Special Education school for students with DB and the PanHellenic Association of DB. However, the school staff is mainly assigned to support children with CDB and the PanHellenic Association of DB is a voluntary organisation that is not supported by the government in any way. In conclusion, the Greek government does not offer any support to the families of people with CDB.
The sibling participants of this research described two different family dynamics similarly to other studies (Heller, Gallagher, & Fredrick, 1999; Correa-Torres & Bowen, 2016). A family with a child with CDB could be a family with strong bonds, and a positive attitude towards special needs. This kind of family may only need information and guidance regarding CDB. On the other side, a family with a child with CDB can experience feelings of disappointment and difficulty in accepting their child’s diversity. In order to accept and understand their situation from the child’s perspective, this kind of a family might need further support services, such as support from a psychologist and counselling.
Suggestions for the available support services
The unanimous suggestion given by all participants about the needed education of the Greek society on matters of disability and CDB denotes the low level of awareness on CDB and other disabilities in the country. A society that is indifferent to people with special needs is a society that lacks empathy and social education. Thus, it seems like an understandable consequence that Greece has not developed effective support services for CDB or disabilities in general yet.
Participants proposed various alterations on the current support services for people with CDB and their families. Similarly to other researches, there is a need for information and guidance of the families (Burton-Smith et al., 2009; Ellis et al., 2002; Sloper & Turner, 1991) and support provided by a psychologist and a social worker (Hatzigeorgiadou, 2009). Typically the diagnostic centers (KESY) are responsible for the information and guidance of the parents, but that does not seem to apply to people with CDB. Maybe that indicates lack of awareness on CDB.
Some suggestions, such as a support center specialized in DB or the public service that will contact and support people with CDB after the diagnosis of CDB, were original and indicate the need for more specialized and accessible support services in Greece. It seems that families of people with CDB need support from specialized professionals who will offer them valid knowledge and information.
When comparing the results of this study with previous research in Greece (Lampropoulou, 1994), it must be pointed out that it seems that nowadays there are day-care centers and homes for people with CDB, but still there are not enough centers to offer recreational activities for people with CDB. These centers would also assist the parents to have some leisure time as suggested by Burton-Smith et al. (2009). In the interviews of this study families of people with CDB suggested the provision of a support worker who would spend time with the person with CDB in their home environment.
Families of people with brain paralysis in Greece (Tsimparli & Tsimpidaki, 2003) seem to share the same views with mothers of people with CDB on the additional medical support services. It is interesting that mothers suggested higher quality of medical services for people with CDB, while a sibling proposed funding for scientific medical research. In line with previous studies (Drosou, 2008; Hatzigeorgiadou, 2009) improvements on the education of people with CDB was proposed, not only in terms of specialization of the professionals, but also in terms of facilities and educational materials.
Awareness
Even though awareness of disability is not easy to estimate (Tham, Bernspång & Fisher, 1999), participants’ perception on Greek society’s awareness of CDB was clear: Greek society is not aware of CDB. This result may demonstrate the Greek culture related to attitudes towards disability and the lack of education and familiarity with disabilities in general and, even more, with CDB.
Even professionals of Special Education do not seem to be aware of CDB. Only professionals who work with students with CDB or had an internship in a school where a student with CDB attended are aware of CDB. This finding questions the training of professionals of Special Education in Greece: Is a degree in Special Education adequate criterion for the recruitment of a professional to work with people with CDB?
Although seminars and conferences that the PanHellenic Association of DB organizes are important means to raise awareness, it seems that only people who have a family member with DB, and are thus already interested in DB, will participate. It is also typical that information leaflets are being sent only to medical experts. Thus, information about CDB is not spread to schools, universities, and social media and Greek society remain ignorant about this group of people and their needs.
Training in the field of CDB
The available training in the field of DB in Greece is seminars provided by the primary Special Education school for students with DB, the Erasmus+ or the PanHellenic Association of DB. Even though seminars are an important source of information, they are not considered sufficient training for being able to teach students with CDB (Correa- Torres et al., 2020). The curriculum of Special Education programs in Greece may include DB in limited sessions of some optional courses. This implies that students of Special Education may never be taught about CDB if they do not select a particular course during their studies. However, they have the right to work in the Special Education School with students with DB in Athens as Special Education teachers.
The law that requires a degree in Greek sign language and a degree in Braille for professionals to work at the primary Special Education school for students with DB proves the low level of awareness of DB in Greece. One professional confessed that these requirements are useful, but are not totally necessary as the students with CDB s/he met so far could not learn the braille and used a limited number of signs for their communication. It would be more important for the school to recruit professionals who had some training on DB or at least participated in seminars about DB before their hiring at the school.
The findings of the education and the training of professionals who work with students with CDB in Greece was collected by a limited sample, but it does demonstrate the lack of education on CDB in Greece. The professionals who travelled abroad to gain more knowledge and experience on CDB prove that the higher educational system in Greece does not support the professionals working on CDB and this situation leads them to search for information on how to teach students with CDB in countries where there is a higher level of awareness on CDB.
As mentioned above, in the cities where the universities with Special Education bachelor programs are located, there are not any special education schools for deafblind students with professionals specialized in teaching students with DB. As a result, Special Education bachelor students are highly unlikely to do an internship during which they learn in practice about teaching students with DB. Despite the fact that the majority of the participants teach about DB and half of them claimed that it is included in the curriculum, most of them (5/6) feel that higher education does not contribute to awareness of DB in Greece.
CDB in the future curriculum
The information that the academics provided revealed certain obstacles in including a course about DB in the curriculum of Special Education bachelor programs. Firstly, an academic must be able to teach four different courses that are not all about one disability only. Hence, the academic who is specialized in DB ought to teach 3 additional courses about other subjects. At the same time, even though all of the academics claimed that a course about DB would be essential, two of the academics claimed that DB is a subject that can be taught in 2 classes. It is evident that these two opinions are contradictory. To conclude, one academic suggested that DB should be taught in Master’s programs which is not in line with the Ministry of Education guidelines which suggest that a graduate of the Special Education bachelor program is expected to be capable of teaching students with DB.
Professionals’ needs and suggestions
The needs of the professionals reveal the current situation in schools and institutions where people with CDB are educated. The first five proposals of the professionals proved the lack of involvement of people with CDB in the community. Since society is not aware of CDB, people with CDB and their families are hesitant to participate in the everyday activities of the community, which would actually assist in increasing awareness of CDB. Moreover, the suggestion for obligatory seminars for the professionals indicates the inadequate level of education provided by the universities and training on CDB and the significance of further education of professionals in order to support people with CDB. It also suggests dissatisfaction with the professional qualifications required by the Greek Ministry of Education.
Limitations of the study
Regarding the limitations of the study, originally I was interested in the hypothesis that academics provide awareness in Greece and there is a connection between higher education in the field of DB and awareness of DB in Greece. However, I realised it was not appropriate to ask participants about this since it felt like I would blame academics responsible for the current situation in Greece.
Indeed, when I began the study I had my own preconceptions and interpretations about awareness and attitudes related to CDB, as well as poor services for people with CDB in Greece. During the research process I received feedback for my ideas and gained experience on developing non-biased interview questions. In addition, I practiced carrying out an interview with a neutral attitude in order to provide an ethical and fair context for the interviews (Flick, 2018). To increase transparency of my coding system, once the interviews were transcribed and coded, I asked another person to check the coding. There was a full agreement on the coding which supports my interpretation of the contents of the interviews (Schebesta, 2018).
Also, a major source of limitation is the absence of people with CDB and father participants in this small-scale study. Due to COVID-19, it was only possible to interview the participants via telephone or video call. Those means of communication are not efficient for people with CDB. Also, all people with CDB that I could locate had additional disabilities that limit their level of understanding. Since the beginning of the study, I did not manage to contact any fathers of a person with CDB willing to participate in the research. I am aware that the perception of fathers would be important because they could provide a different perspective to the experiences and needs of families with CDB.
Because of the overall limited number of participants, this research is not considered fully representative of the current situation in Greece. Despite the utilization of all the available means to recruit participants for the study, only a small sample of participants was willing to be interviewed. It is possible that especially families with a person with special needs are busy and overburdened with their daily lives, especially during COVID-19. It is also possible that because of the lack of awareness and education in Greece, there are some barriers related to people’s openness and readiness to discuss certain subjects related to special needs in the Greek context.
Conclusion
Based on this small-scale study, it seems that it would be useful for families of people with CDB to have easy access to efficient support services. Since the population of people with CDB is limited, it would be a more realistic idea for the diagnostic centers (KESY) to collaborate with professionals specialized in DB. The professionals at KESY are mandated primarily to assess the abilities and disabilities of people with CDB, as well as to inform and guide the family regarding the specialized medical experts, the support services, and the most suitable school unit for the child. This suggestion is practicable since KESY as the diagnostic centers are already cooperate with external professionals when a child’s need requires it. Professionals drew attention to the need for governmentally sector funded early intervention services. Early intervention is highly specialized service that may shape developmental and functional patterns being formed during the birth-to-three period (Towle et al., 2020). Since there are already available early intervention services for people with developmental disabilities in Greece, it is reasonable to propose that the Greek government funds centers that offer early intervention services to young children, would extend that to children with DB as well.
Both of the suggestions mentioned above presuppose education and information in the field of DB. Academics suggested the formulation of an official center for DB that would help them gain access to information about DB and teach about it at higher education. Since there is already some expertise in DB in Greece, this request could be at first granted by the Greek government by providing recognition and financial support to the PanHellenic Association of DB. With such support, the members of the association could acquire even higher quality of knowledge in DB, organize more events to spread this knowledge and collaborate with the universities to provide education and carry out research.
In terms of research, it would be beneficial to conduct emancipatory and participatory research (Chown et al., 2017). Importantly, research would include the voice of people with CDB and their families, who would participate in the formulation of the research based on those subjects that they believe that are the most important and relevant to their needs. An additional idea could be to formulate focus groups and workshops as the participation of people with CDB and together with others involved could be efficient for the research of CDB. Well-thought knowledge translation would be needed to reach the wider society so that also the attitudes and awareness of CDB in Greece would increase.
