Multiple disability as a social problem Only rarely does a person's disadvantage occur in an isolated form. Disadvantages in the field of communication, social relations and social integration are often connected to mental, sensory or somatic handicaps. Comprehensive care for people with disabilities requires the cooperation of the Ministry of Health, the Ministry of Education, as well as the Ministry of Labour, Social Affairs and the Family, while maintaining and respecting the competences that result from the legal regulations of individual departments and the expertise of the entities that jointly participate in this care.
Disability is defined from several aspects. Matoušek (2003) characterizes a person's disability as a disability that adversely affects the quality of his life, especially the ability to establish and maintain relationships with people and the ability to work. The main, commonly used categories of disability are hearing impairment, visual impairment, speech/communication impairment, mental impairment, locomotor impairment, and mental impairment. They can occur in different degrees and in different combinations in an individual person. For the purposes of Act no. 5/2004 Coll. on employment services, a citizen with a disability is a citizen recognized as a disabled citizen or a citizen who has a decrease in the ability to perform gainful activity by 20%, but no more than 40%. Strieženec (1996) defines disability as an injury caused by a physical or mental disorder or a combination thereof. But we also find many other definitions that result from various regulations and directives that deal with the integration of people with disabilities in society.
Enabling such persons to enjoy equal opportunities is the essence of the European Union's long-term strategy to ensure their active participation in society. In 2007, the European community and member states confirmed the belief that the topic of disability is a human rights issue and needs a legal basis. Disability Action Plan 2006 - 2015. The plan is a tool to implement strategies and to ensure that disability issues are taken into account in all relevant policy areas. Its aim is, among other things, to integrate people with disabilities into society regardless of their nature, whether psychological, educational, family, cultural, social, professional, financial or architectural (Disability Action Plan; DAP, 2006). The United Nations (UN) has adopted a long-term strategy for the implementation of the World Program of Action concerning people with disabilities. The leading vision of this strategy was the concept of society for all (society for all), which is based on three main pillars of the World Program:
- Prevention of disability
- Rehabilitation
- Equality of opportunities for people with disabilities (EU policy in the field of human rights of people with mental disabilities and the EU enlargement process, 2003-2004).
On May 3, 2008, the UN Convention on the Rights of Persons with Disabilities entered into force. This Convention goes beyond the issue of access to the surrounding physical environment and deals with broader issues such as equality and the removal of legal and social barriers to participation in life in society, social opportunities, health, education, employment and personal development. The Convention upholds the standard of human rights and their application from a "disability perspective", advocating equal citizenship after decades of discrimination. This agreement sees disability as a result of the interaction between the inaccessible surrounding environment and the given person rather than as an internal property of the given individual (Mišová, Stavrovská, Záhorcová, 2009).
The common denominator in special pedagogy and social work in the context of care for the medically disadvantaged is to use their potential, compensate for the negative consequences of their disadvantage and strive for their integration into a society that respects the rights, dignity and equal opportunities of all people. While in special pedagogy it is mainly about the special education of individuals with special educational needs, in social work it is primarily about finding out and mediating the solution of social work and legal matters of the medically disadvantaged - i.e. social and occupational therapy. In both cases, it is a professional, specialized mainly individually oriented intervention with the aim of eliminating or mitigating the consequences of the disability, i.e. comprehensive rehabilitation of the disabled. The common goal of both departments is ultimately to help improve the quality of life, social integration of health-impaired citizens, draw the public's attention to their problems and try to find appropriate solutions to these problems.
One of the most vulnerable groups of people with disabilities is the group of people with disabilities who, due to the severity and complex nature of their health impairment, require a high degree of assistance. The quality of their lives depends heavily on the availability of adequate and high-quality services that meet the needs of these people and their families, to enable their participation in society to the maximum extent possible, instead of similar services provided generally to people with disabilities. This group tends to be the group most likely to be living in an institutional setting or in some cases living with their family, but may become isolated due to little or no contact with service provision and other members of society. For these reasons, people from this group require intensive and constant quality services focused on their specific needs (Council of Europe Action Plan for People with Disabilities 2006). As stated by Vančová (2001), the issue of persons with symptoms of multiple disabilities was, until recently, marginal within special pedagogy. This area was also supported by grant research projects and in 1996 it was established as an independent part of special pedagogy - pedagogy of the multiple disabled.
Vašek (2003, p. 37) characterizes multiple disabilities as "a multifactorial, multi-case and multi-symptomatology conditioned phenomenon, which is a consequence of the interaction of participating disabilities or disturbances. Their interaction and mutual overlap creates a so-called synergistic effect, i.e. a new quality of disability different from the simple sum of the present disabilities and disturbances. This phenomenon significantly conditions the individual functioning of compensatory mechanisms individual". All people without distinction have the right to life. However, the quality of life for persons with severe multiple disabilities depends on the quality and availability of services provided to them. One of the indicators of the country's maturity is the level of care for these people. Multiple disability, with its heterogeneity and variability, affects all areas of life of persons with this type of disability. It is a broad issue that causes difficulties in several areas of life at the same time:
- in a family with a child with multiple disabilities,
- in access to education and work (lack of specialized facilities),
- in spending free time and personal life,
- in access to compensatory aids,
- in access to other information from the current legislation (Act No. 447/2008 Coll.), etc.
Deafblindness as a social problem
Among the most serious multiple disabilities is deafblindness. Some authors divide deafblindness as a specific subcategory within severe multiple disabilities. It is a unique combined disability characterized by a simultaneous visual and hearing defect (Definition of deafblindness, 2009). As stated by Farbancová (2000, p.1): "During the diagnosis of deafblindness, even experts are subject to the idea that a person so affected cannot see or hear absolutely anything, lives in complete darkness, in absolute silence" However, deafblindness goes through several stages, from social to complete. A deaf-blind child has a disturbed perception of the surrounding world - he is isolated, withdrawn, with autistic features. Limited abilities prevent him from meaningfully, fully communicating with the environment. Health problems are accompanied by other difficulties which, without adequate care and qualified help, can culminate in serious disorders of psychosomatic development and personality formation (Farbancová, 2000). Unfortunately, there are only a few facilities in Slovakia that provide comprehensive care for people with this serious type of disability. There are at least 150,000 deaf-blind people in the European Union, who represent one of the most socially excluded groups of European citizens. Deafblind people are often isolated, unable to get a job or even unable to go to shops without help (Hajdeckerová, Šarišská, 2010). The communication of the deaf-blind is already a problem. In this case, tactile perception is a means of communication, whether it is a simple body signal, object communication, sign language or finger alphabet. Communication in deaf-blind children and adults is highly individualized and depends on the state of vision and hearing. If it is a total loss of both senses, touch is dominant in communication. If the remains of sight and hearing are preserved in the disabled person, these channels are also used for communication. However, qualified care and a system of professional advice in the care of such persons, where the close cooperation of several experts (doctors, special educators, therapists, social workers, etc.) is necessary, remains a problem. According to the nature and goals of the activities carried out in them, the system of institutions can be divided into advisory, educational, rehabilitation, treatment, social and legal protection, and re-education (Vašek, 2003).
In Act no. 448/2008 Coll. on social services, a specialized facility where social services are provided to a natural person who is dependent on the help of another natural person and has a disability appears in the system of social services to solve an unfavorable social situation due to a severe disability. In addition to other types of disabilities, deafblindness is also mentioned here for the first time (Act No. 448/2008 Coll.).
However, the real situation is that there is only one special school in Slovakia that provides education to students with this type of disability. It is a school in Červenica near Prešov. As Farbancová (2002) states, in the history of special pedagogy in Slovakia until 1991, there is no source of information documenting the care of deaf-blind people. The evangelical auxiliary boarding school for deaf-blind children was established by the evangelical church of the Augsburg confession in Slovakia, and in 1992 the Ministry of Education of the Slovak Republic included it in the network of special schools. It is the only school of its kind and focus in the Slovak Republic providing education and training to children with the most serious health handicaps, who were considered uneducable in the past.
There is only one specialized facility for deaf-blind adults in Slovakia - Maják, in Zdoba near Košice. This facility started its activities in 2007. The school in Červenc currently has 23 students. Since September of this year, the school has changed its name to Evanjelická spojená škola internátna, which includes a special kindergarten (5 children with combined disabilities), a special elementary school (12 children, of which 3 are totally deaf-blind, the rest with dual disabilities, i.e. residual vision or hearing) and a practical school, where there are currently 6 young people over 18 years of age. In the practical school, students can study for another 3 years and train in the fields of: Food preparation, Construction (auxiliary work), Gardening (auxiliary work), Basket making (auxiliary work), Nursing. Upon completion, the student will receive a certificate of completion of the practical school and training in one of these fields. The intention is to prepare students within their possibilities for the next life, to provide them with the opportunity to acquire skills in the area that allows them to do so. The school currently has 27 employees. Pupils are educated according to an individual educational plan.
The content of education and training consists of the following areas (Farbancová, 2000):
- Development of gross and fine motor skills
- Cognitive development
- Developing communication and speech
- Work education
- Development of orientation, mobility and perceptual abilities
- Social and emotional development.
With early intervention, it is possible to achieve positive changes in the level of their upbringing and education even among these students. An individual approach and comprehensive professional care are essential. A special educator working with such children often has to make maximum efforts to achieve minimum achievements. In addition to expertise, he must also have other personal prerequisites that are necessary when working with such children. Legislation in education is set in a direction that respects that in the education of the deaf-blind and students with multiple disabilities, or students with autism, a teacher's assistant is also necessary in education at the same time as the teacher (§ 6 of Decree No. 322/2008 Coll.). However, not all schools, due to financial, organizational or other reasons, can afford an assistant in every class where one is needed. The education reform caused that from September 1, 2009, according to Act no. 245/2008 Coll. (on education and training) a new state education program came into force, where 3 state education programs are also approved for deaf-blind students: pre-primary education (special kindergarten), primary education (special elementary school), secondary education (practical school).
Legislative definition and quality of life of persons with multiple disabilities
Citizens with severe disabilities are an integral part of every society. How they integrate into this society depends not only on it and their disability, but also on how they are able to overcome the limitations that result from their disability in life. However, there is an unwritten rule that the development of a country can also be judged by the quality of care and access to disabled citizens. In 2008, two laws were approved, which should help solve the difficult situation even for severely disabled citizens. Law no. 448/2008 Coll. on social services regulates legal relations in the provision of social services, financing of social services and supervision of the provision of social services. Its goal is to support the social inclusion of citizens and to satisfy the social needs of people in an unfavorable social situation (Act No. 448/2008 Coll.).
Law no. 447/2008 Coll. on monetary contributions to compensate for severe disability, which regulates legal relations in the provision of monetary contributions to compensate for the social consequences of severe disability. The aim is to support the social integration of a physical person with a severe disability into society and their active participation in preserving their human dignity. In order to increase the objectivity of the assessment of disadvantages and the provision of financial allowances for compensation, the legislation defines the dependence of a physical person with a severe disability on compensations and specifically regulates the dependence of a physical person with a severe disability on compensation for increased expenses related to hygiene, establishes the conditions for providing a new monetary allowance intended for the purchase of lifting equipment and a monetary allowance for personal motor vehicle modification. It introduces the categorization of aids and the provision of a monetary allowance for the purchase of an aid on the basis of an exhaustively defined list of aids, as well as a list of construction works, materials and equipment for the purpose of a monetary allowance for the modification of an apartment, family house or garage, which increases the objectivity of the provision of this form of aid (Act No. 447/2008 Coll.).
The quality of life of persons who, as a result of their multiple disabilities, are dependent on lifelong care ultimately depends on the quality and complexity of the services provided to them. A number of experts from the social, medical and social fields draw attention to the fact that for the resocialization of a person with a severe disability it is important to examine how people with a disability are defined. It is about whether they are defined through their disability - in the sense of what they cannot do - (disabilities), or through their skills and abilities - (abilities). Even if it is realistically not possible to fully include these severely multiple disabled people in ordinary social life, a change in the approach and attitude towards these people on the part of society is very important.
An indicator of the integration of disabled people into society is to provide them with suitable and appropriate housing, work, leisure time, and self-advocacy. The specialized facility for deaf-blind adults Maják in Zdob near Košice provides year-round and continuous care according to individual development plans, social counseling and social services. The main goal is to ensure a dignified life in all areas of a deaf-blind person's life. The specific goals include housing that respects the individual needs of the client, communication appropriate to the level of each individual, development according to the client's individual plans (social and emotional development, cognitive development, physical development, spatial orientation, acquisition and consolidation of skills for everyday life), provision of social prevention and social counseling and social services for target groups in the field of deafblindness, creation of opportunities for individual work, care and educational programs aimed at developing their personal potential, analyzing the possibilities and work skills of disabled citizens, searching for possibilities of work activities for specific clients in the vicinity of the facility and outside it, contacting employers with the aim of presenting the work potential of the deaf-blind and multiple disabled (Hajdeckerová, Šarišská, 2010).
Work fills people's lives, gives meaning to their being. At work, a person experiences positive emotions, teaches people communication, the ability to respect others. For those with multiple disabilities, work is part of a treatment, educational or support program. This is about occupational therapy (ergotherapy), art therapy (art therapy), which are used as one of the forms of complex care and work on the development of motor and communication skills, as well as on the self-realization of the multiple disabled person, meaningful spending of time and the development of cooperation with others. Spending free time for these people depends on the environment, organization and conditions that are created so that individual activities can be carried out. Various supportive therapies (canistotherapy, hippotherapy, hydrotherapy), rehabilitation and relaxation stays for multiple disabled children and their families are used, which contribute to positive experiences, socialization and complex rehabilitation of people with multiple disabilities. Although sometimes it may seem that it is little, just a positive experience, a change of environment and contact with other people, can mean a lot in the quality of life of these people.
Complex rehabilitation of persons with multiple disabilities
In special pedagogy, the term complex rehabilitation means a set of activities of a multidisciplinary nature, aimed at preventing, mitigating or removing the adverse consequences of a disability (defect) or disturbance, mainly in favor of optimal socialization. It is a mutually coordinated and subsequent series of activities of all participating professionals in a planned sequence or simultaneously carried out in the interest of socializing an individual with special educational needs. It follows from the above that complex rehabilitation is a function of the synergy of components such as: medical, educational, social, occupational rehabilitation (Vašek, 2003). One can agree with Novosad (2000), who states that: "Comprehensive rehabilitation involves the interconnected and team use of applied methods from the fields of medicine, social work, education, education and professional training as well as supported work application to adapt the individual to different, non-standard or difficult living conditions and to obtain or regain and consolidate the highest possible independence and adequate functionality of the ability". In addition to medical, pedagogical, work and social rehabilitation, comprehensive rehabilitation also includes psychological and leisure rehabilitation.
The goal of the social rehabilitation stage is to eliminate or at least mitigate the consequences of social problems (Tokárová et al., 2007). A social worker, educator, occupational therapist, special pedagogue, therapeutic pedagogue, social pedagogue, psychologist, carer, physiotherapist, therapeutic nutrition assistant, nurse providing professional nursing tasks or social rehabilitation instructor is considered a professional employee for the purposes of providing social services. Social rehabilitation according to § 21 of the Act on Social Services No. 448/2008 Coll. is "a professional activity to support the autonomy, independence, self-sufficiency of a physical person by developing and training skills or activating abilities and strengthening habits in self-care, household care and basic social activities".
In the social rehabilitation of deaf-blind persons, it is important to make a diagnosis and evaluate the level of knowledge, skills and habits in the area of perception, spatial orientation, mobility, social, emotional, communication, cognitive, motor area and what is the level of skills for everyday life. Other tools and forms of social rehabilitation include bibliotherapy, drama therapy, basal stimulation - somatic, vestibular, tactile-haptic stimulation, therapeutic physical education - rehabilitation - individual exercises, hydrotherapy, crisis intervention - client self-aggression (preventive action, early recognition of signals, elimination of already existing manifestations). (Hajdeckerová, Šarišská, 2010).
In Slovakia, in the early 1990s, early care centers began to be built in some places. Their basic idea is the fact that support and timely stimulation should start as soon as possible, already in the maternity ward, if possible due to the diagnosis. The earlier the changes in development (diagnosis) are detected, the sooner a therapeutic program can be started. Timely treatment is a prerequisite for restoring the altered function or at least reducing the degree of disability. An important part of working with a client at this level is social therapy, family therapy and group therapy. Internal workers are social workers, therapeutic pedagogues, psychologists, external collaborators who guarantee the comprehensiveness of counseling services are, for example, doctors, lawyers and various other specialists (Šustrová, 2008).
As Farbancová (2000) states, in the context of early assistance to deaf-blind children, the time factor appears to be a problem in addition to economic difficulties. Abroad, this professional help begins immediately after the birth of a child with a combined sensory disability. However, we do not have such flexibility yet. The reason for the delay in the arrival of specialists is often the isolationism of the parents of a disabled child, who find it difficult to cope with the harsh reality and choose to remain closed in the home environment, which does not solve anything.
It is clear from the following that it is in this area that space is being created for social work, professional social counseling and social services for a family with a multiple disabled child. Services that support a family with a disabled child are mainly (Matoušek, 2005):
- screening activity – i.e. searching for families with a disabled child,
- counseling - focused on how to best develop the child's abilities, but also on what services are available, what benefits parents are entitled to, etc.
- psychological counseling - because the family has to manage stressful situations.
The coordinating role of the social worker in the timely care of a child with multiple disabilities should be part of a comprehensive intervention by experts. As Matoušek (2005) concludes, social work with the disabled must avoid the risk of accepting medical concepts that imply that the disabled are "socially dead". Interest, once based on charity or regret, must be shifted to the defense of rights. In practice, this means reflecting on individual, cultural, structural and physical obstacles preventing people with disabilities from social application. Social work with the disabled must use the principle of partnership and perceive handicap more as a social than a physical handicap. Disabled people must not be denied the help they need, only then will the ideal of true inclusion be achieved.
Conclusion
The solution to the social issue of persons with multiple disabilities would be to build a complex care system, linking medical, educational, social, work, psychological and leisure care under the supervision of experts from all these areas. This rehabilitation takes place in various institutions (e.g. in medical facilities, social service homes, special schools), at work, in the family and, in recent years, increasingly within non-governmental non-profit organizations (civic associations and other beneficial societies). It would be worth considering to create, legislatively define and financially subsidize a complex of facilities for persons with multiple disabilities, where they would be provided with lifelong care, but at the same time they would be given the greatest possible access - integration into society. Caring for these people should not be largely the responsibility of the church and non-governmental organizations. It is necessary to create other state facilities of this kind in Slovakia. Families with multiple disabled children should also be supported and caught in time, who in many cases need psychological and spiritual help in addition to specialized counseling. As Farbancová (2000) concludes, it is precisely here that a more qualified and erudite approach of experts (pediatricians, social workers, psychologists) is lacking, who are not always able to inform parents about the available options, forms of upbringing, education, and social rehabilitation of children with multiple disabilities, therefore the decisive developmental phase of the child's personality is missed up to the age of six.
Various cultural and social activities and projects that support these people should appeal to the fact that the quality of life of persons with multiple disabilities will really improve in the future. One can only agree with the statement of Jankovský (2001), who says that: "a person, as a social being, is humanized and socialized within human society. This also applies to a person with a disability. It therefore depends a lot on his social position, on the role he fulfills in society, on how he is accepted by society. If this relationship is to be balanced, it is the task of rehabilitation that a person with a disability is able to accept his disability, illness, or disadvantage and integrate into society to the maximum extent possible. This preserves the optimal quality of his life, which leads to his life satisfaction (social comfort)".
Authors: PhDr. Alena KOLLAROVÁ, PaedDr. Miloš KOLLÁR Photos used: Evangelical United Boarding School, http://www.eszscervenica.sk****
References Action plan of the Council of Europe for people with disabilities for the years 2006-2015. (Disability Action Plan; DAP). 2006. Ministry of Labour, Social Affairs and Family of the Slovak Republic [online] [cit. 2010-08-19] Available at: http://www.employment.gov.sk/index.php?SMC=1&id=15213
Declaration of the rights of people with mental disabilities. UN [online] [cit. 2010-08-16] Available at: http://www.inclusion-europe.org/Justice/UN_Conventions_SK.pdf
FARBANCOVÁ, M. 2000. Evangelical auxiliary boarding school for the deaf-blind in Červenica - report. Svit: seminar Framework approach to the removal of information barriers and the development of information services for the visually impaired November 7-8, 2000
HAJDECKEROVÁ, H., ŠARIŠSKÁ, J. 2010. Deafblindness. [online] [cit. 2010-09-11] Available at:http://www.nrozp.sk/index.php/soc-rehabilitacia/hluchoslepota/93-hluchoslepota
Deafblindness - classification, definition, causes. 2009 [online] [cit. 2010-03-04] Available at: http://www.lorm.cz/download/HMN/obsahCD/hluchoslepota.html
JANKOVSKÝ, J. 2001. Comprehensive rehabilitation of children with physical and combined disabilities. Prague: TRITON. 2001, 146 p. ISBN 80-7254-192-7
MATOUŠEK, O. 2003. Dictionary of social work. Prague: Portal. 2003. 287 p. ISBN 80-7178-549-0
MATOUŠEK, O., KOLÁČKOVÁ J., KODYMOVÁ P. 2005. Social work in practice. 1st ed. Prague: Portal. 2005. 351 p. ISBN 80-7367-002-X
MIŠOVÁ, I., STAVROVSKÁ, Z, ZÁHORCOVÁ, V. 2009. UN Convention on the Rights of Persons with Disabilities. Bratislava: ZPMP v SR. 2009. ISBN 978-80-89344-02-4
NOVOSAD, Libor. 1997. Some aspects of socialization of people with disabilities. Chapters from the sociology of handicap. Liberec: Technical University. 1997. ISBN 80-7083-563-X
EU policy in the field of human rights of people with intellectual disabilities and the EU enlargement process. [online] [cit. 2010-03-04] Available at: http://www.rojko.sk/files/989d08c5575224588c1f92946d3d2430
STRIEŽENEC, Štefan. 1996. Dictionary of the social worker. Trnava: Sapientia. 1996. 255 p. ISBN 80-967-589-0-X
ŠUSTROVÁ, Mária. 2008. Social work for the benefit of people with intellectual disabilities. Bratislava: University of Health and Social Work St. Elizabeth. 2008
TOKÁROVÁ, Anna et al. 2007. Social work - Chapters from the history, theory and methodology of social work. Prešov: Accent print. 2007. 572 p. ISBN 978-80-969419-8-8
VANČOVÁ, Alica. 2001. Education of the multiple disabled. Bratislava: Sapientia, 2001. ISBN 80-967180-7-X
VAŠEK, Stefan. 2003. Basics of special pedagogy. Bratislava: Sapienta. 2003. 210 p. ISBN 80-968797-0-7
Law no. 245/2008 Coll. on education and training (School Act) and on amendments to certain laws.
Law no. 5/2004 Coll. on employment services and on amendments to certain laws
Law no. 448/2008 Coll. on social services and on amendments to Act no. 455/1991 Coll. on trade entrepreneurship (Trade Act) as amended.
Decree no. 322/2008 Coll. Decree of the Ministry of Education of the Slovak Republic on special schools.