Children’s disability – A risk factor for access to dental care

Summary

Disability is a complex, medical and social problem globally, and it is necessary to have detailed knowledge of the social, medical and legal aspects of persons with disabilities for a better integration into society and to ensure access to social and medical-health care services.

Objectives: to analyze literature data and make a synthesis of medical and social features of children with disabilities.

Material and methods. Publications with reference to the medico-social aspects of children with disabilities were searched. The information was systematized with the presentation of the main aspects of the medical-social status of children with disabilities.

Results. The final bibliography included 61 sources necessary to formulate the ideas of the given text. The analysis of literature data reveals that disability is a medical and social problem, and children suffering from severe and accentuated deficiencies need specialized long-term medical care, and in some cases – throughout life. The ratification by the Republic of Moldova of the UN Convention on the Rights of Persons with Disabilities in 2010 laid the groundwork for a substantial reform in the field of social insurance of persons with disabilities in our country. However, the situation of people with disabilities in our country remains problematic.

Conclusions: Studies conducted in the last decades have found an increasing number of people with disabilities and limited access to public health services. In order to increase access and improve the quality of healthcare for people with disabilities, including dental care, joint efforts of both the government and the society as a whole are needed.

Keywords: disability, deficiency, special needs.

Introduction

Disability is a complex medical and social problem on a global level. According to the latest estimates, people with disabilities represent 15% of the world population, about two thirds coming from developing countries and with a transition economy. In Europe, the number of people with disabilities is around 80 million (over 15% of the continent population). Of these, 15 million are children aged 0-18 years [1, 2]. In the Republic of Moldova, the number of persons with disabilities is 184.8 thousand, accounting for 5.2% of the country population, the number of children with disabilities being 14.7 thousand or 2% of the total number of children [3, 4].

According to Barnes C., 2003, disability is one of the significant means of social differentiation in the modern society, substantially marked by the influence of some ideologies. The way in which a society excludes certain groups or individuals involves the categorization processes, focusing on the emergence and identification of some incapacities, on the inferior and unacceptable aspects of a person [5].

In recent decades there has been a significant change in public policies regarding persons with disabilities globally [6]. The ratification by several countries of the UN Convention on the Rights of Persons with Disabilities laid the foundation for substantial reforms in the social insurance of these persons. However, to date, in several countries, including in the Republic of Moldova, the situation of persons with disabilities remains uncertain [7], particularly the problems related to their health being extremely acute. Therefore, for a better integration into the society and to ensure access to social and medical-health care services, it is necessary to obtain detailed knowledge of the social, medical and legal aspects of persons with disabilities.

The objective of the work was to analyze literature data and to make a synthesis of the medical and social aspects of children with disabilities.

Materials and methods

In order to achieve the objective set, the scientific publications were searched using the keywords disability, deficiency, handicap, special needs, persons with disabilities. After examining the titles of the works found, only the works which, possibly, could include information on the medico-social aspects of children with disabilities, were selected. Original research articles have been selected, as well as the UNICEF reports, from the National Bureau of Statistics of the Republic of Moldova, several projects on implementing the UN Convention on the Rights of Persons with Disabilities, as well as social and educational inclusion of children with disabilities. The bibliography of the selected works was also studied, in order to find other articles relevant to the proposed purpose. The results of the recent studies took precedence over the older hypotheses. The results obtained in several studies took precedence over unconfirmed or contradictory studies. The conclusions of the existing journals were critically examined. The list of publications generated by the search engine excluded publications not accessible for viewing.

Results and discussions

As a result of the information processing according to the search criteria, 299 papers were found that address the medical and / or social issues of people with disabilities. After analyzing the titles, 132 papers were qualified possibly relevant to the topic of the given review. If necessary, to clarify some aspects, additional literature was consulted. As a result, 127 publications were selected concerning the study of the medico-social features of persons with disabilities. Of the total number of publications selected, the abstracts of 111 works are accessible, access to 61 full text sources was possible. Thus, the final bibliograph included 59 necessary sources to formulate the ideas of the given text. The information was systematized focusing on the main features of disability classification and disability models, frequency of disabilities, medical-social status of children with disabilities worldwide and in the Republic of Moldova.

The assessment of the health status of the population in 2012 elucidated that “over one billion people (or about 15% of the world population) face a form of disability, of which about 200 million face major operating difficulties”. These data significantly exceed the results of WHO estimates from the 1970s, which suggested a global prevalence of disabilities of around 10%, and in the coming years disability will require even greater attention from the society, as its prevalence is steadily increasing [1].

The study results of the prevalence of children with disabilities differ significantly depending on the definition and assessment tools. The Global Burden of Disease study found that the number of children between 0 and 14 years old, who are experiencing “moderate or severe disability”, constitutes 93 million (5.1%), of which 13 million (0.7% ) are facing severe deficiencies [1, 2]. In 2013, UNICEF estimated the number of children with disabilities under the age of 18 to be 150 million [8, 9]. In countries with low and medium socio-economic status, the prevalence of children with disabilities varies between 0.4% and 12.7%, the estimates results being dependent on the assessment tools used [1, 10]. A study of the medico-social status of the population, carried out in the developing countries, found important difficulties in identifying and describing disability, determined by the cultural particularities and lack of specific language assessment tools in the countries concerned [11]. Thus, considerable variations in the prevalence of children with disabilities in the underdeveloped states could indicate that most of the deficiencies are not identified or the persons concerned do not benefit from the necessary services [1].

Disability has a dynamic and multidimensional character [1, 5], and in order to reveal its essence, three conceptual models have been proposed: medical, social and biopsychosocial. According to the concept of medical model, disability is an individual health problem that requires professional individual treatment, and if a person suffers from a mental illness, this is perceived as a personal difficulty. The medical model is known as the “personal tragedy model”, considering that the difficulties which people with disabilities face are caused by their individual particularities, and the purpose of the disability conduct is to cure or adapt as well as to change the patient’s behavior [11].

The social model treats disability as an unequal relationship within thesociety where the needs of persons with disabilities are not appropriately considered. The biopsychosocial model of disability adopted by the WHO brings together the medical and social model, and in contrast they address infirmity as a result of the interaction between biological, psychological and social factors [1, 7, 11]. Thus, according to the definition proposed by the WHO, “disability is represented by any restriction or lack (resulting from an infirmity) of the capacity (ability) to perform an activity in the manner or at the level considered normal for a human being” [1, 2, 8-12].

In the European Union countries, disability is considered a problem of the whole society. This approach requires continuous preparation and adaptation in all spheres of life for the inclusion of these persons in the social life [1, 5, 11]. The Millennium Development Goals provide for the elimination of all barriers that obstruct the active participation of persons with disabilities in social life, access to education [11] and quality healthcare.

For the objective assessment of the disability severity, a complex and differentiatedapplication of medical, psychological and social criteria is necessary, being adapted to the age particularities of the targeted children. The children are classified in degrees of disability depending on the deficiency intensity and the degree of correlation with the age-matched psychosocial functioning. The assessment of the disability severity will be carried out in accordance with the International Classification of Functioning, Disability and Health, for children and adolescents (CIF-CA, 2007) [13], since the 2001 CIF classification has failed to fully cover the needs for the evaluation of functioning and disability of the child and adolescent [14, 15]. The main categories of deficiencies are: sensory (visual and auditory), neuromotor, mental, language, associated and behavioral disorders. Based on the outcome of the health status assessment, if deficiencies are established, the disability severity will be evaluated as follows: severe, accentuated, medium or mild (Table 1) [16].

Table 1. Degree of disability [16]

Gavriliță L., 2011 Sochirca L., 2013 and Dilion M., 2014, mentioned that in our country the degree of disability severity in children is determined on the basis of the medical model and does not encourage the social inclusion of children with disabilities. There are also problems in the assessment of the child’s health status (determination of permanent deficiencies). This is not fully achieved due to the lack of a standardized evaluation tool. Currently, the notion of disability is classified into the following typologies: physical, visual, auditory, deafblind, somatic, mental, psychic, HIV / AIDS, associated and rare diseases. However, social reality requires a rethinking of the notion of disability in the following typologies: physical (visual, auditory, deafblind, associated, motor, etc.), psychic, intellectual and multiple. It is particularly difficult to assess children of an early age or childrenwith mental deficiencies and speech disorders (for example, frequent mental retardation is established by approximation) [7, 17, 18].

The study carried out UNICEF by in 2013 found that children in developing countries are exposed to multiple risks, including: poverty, malnutrition, poor health and, last but not least, the non-stimulating family environment that often creates significant obstacles to their cognitive, motor and social development [8-9]. As a rule, children at increased risk of disability are not breastfed or do not receive the necessary care. Along with the increase in the delay severity in physiological development, the proportion of children whose disability risk tests are positive increases [19-32]. Thus, Grantham-McGregor S. et al., 2007, reported that about “200 million children under 5 years of age fail to reach the potential of cognitive and socio-emotional development” [22].

UNICEF tested over 200,000 children aged between 2 and 9 from 20 countries (in 19 languages) to identify the risk of disability. Following the studies, it has been established that in most countries the prevalence of disability risk in children varies between 14% and 35% [19]. Robson C., Evans P., 2005 and Robertson J, Hatton C., Emerson E., 2012, mentioned that such studies do not ensure the identification of children at risk of disability associated with mental and psychic disorders [24-25]. The monitoring of children with disabilities in developing countries, carried out in 2008 by the United Nations Children’s Fund, has established in the subjects with disability risk a high prevalence of the following favorable conditions: families with low socio-economic or social-vulnerable status, daily confrontation with discrimination and restricted access to social services, including restricted access to early childhood education and medical care; malnutrition and stunted growth, frequent physical punishment by parents or caregivers, compared to children without the risk of disability [23].

Most studies have found an increased rate of poverty and reduced accessibility to education of people with disabilities, compared to healthy ones [23, 28-32]. Assessment of the socio-economic status in the family environment in 15 developing countries showed that the expenses of the families, that care for a person with a severe or accentuated disability, exceed 1.3 times the annual expenses of healthy persons [30]. Families, that have members with disabilities, have fewer properties and poor living conditions [28-32]. Thus, the results of the studies carried out in developing countries have confirmed the assumption that disability deepens the state of poverty.

According to the data presented by the National Bureau of Statistics of the Republic of Moldova, the total number of persons with disabilities is 183 thousand, which represents 5.2% of the total population of the country, of which 14.7 thousand are children aged between 0 and 18 years or 2.1% of the total number of children [3-4]. On average, there are 519 persons with disabilities per 10 thousand inhabitants, of which each seventh subject falls in the category of those with severe deficiencies. The disability rate for the rural area constitutes 557 persons per 10 thousand inhabitants, compared with 461 per 10 thousand urban population [3]. Of the total number of persons with disabilities on the state social insurance record, in 71% – somatic diseases were the main causes of deficiencies, 15% being disabled since childhood.

“The main causes of primary disability are congenital malformations, chromosomal abnormalities and deformities (24%), mental and behavioral disorders (19.9%) and diseases of the nervous system (14.6%) [4].

According to the data of the National Bureau of Statistics of the Republic of Moldova the most common types of disabilities recorded are mental and behavioral disorders, including mental retardation (21%), nervous system disorders, including childhood cerebral palsy, congenital malformations and chromosomal abnormalities (21 %). Thus, out of the total number of children with disabilities, 5 649 (43%) present one of these three types of disorders. In 10 thousand children aged 0-17 years, on average, 7 pediatricians and 46.5 children beds. About 130,000 children or every fifth child are admitted to hospital every year [4].

Caring for people with disabilities is a challenge for all world states, including our country [33-35]. The ratification of the UN Convention on the Rights of Persons with Disabilities by the Republic of Moldova in 2010 laid the groundwork for a radical reform in their social insurance [36-37]. However, the situation of people with disabilities in our country remains problematic, being particularly acute because of the problems related to their health status [38-44]. For a better integration into the society and ensuring access to social, medical and health care services, it is necessary to have a detailed knowledge of the social, medical and legal aspects of persons with disabilities and to combine the joint efforts of the government and society in order to increase access and improve the quality of medical-social assistance for people with special needs [45-48].

During the last years the Republic of Moldova has made significant progress in consolidating the strategic objectives in the field of disability and in promoting coherent policies, programs and initiatives, which are in line with European and international standards. In order to improve the care of children with mental and behavioral disorders in the Republic of Moldova, the National Strategy for the development of mental health services has been developed at community level and its integration in primary health care during 2013-2017, whose main objective is to develop and extend out-patient medical-social services for people with mental problems, to ensure more effective psychosocial rehabilitation and social inclusion for children and adults with mental disorders, including their families and relatives. These measures allow early diagnosis of the diseases and intervention in case of necessity in order to prevent the appearance of disabilities, including among children [49-50].

Despite this fact, in our country children with disabilities remain one of the most vulnerable and marginalized categories of population. Most of them are excluded from the society and live in conditions of extreme poverty and isolation, without access to services that could help them overcome or compensate for their disabilities and learn to take care of themselves and to become useful citizens in the society. In 2002, the International Committee on the Rights of the Child expressed deep concern about the increase in the number of children with disabilities in the Republic of Moldova and the insufficient support given to the families with such children. The Committee also noted that little effort was made to integrate children with disabilities both into the general education system as well as into the society, including cultural and recreational activities. The Committee has expressed concern about the terminology used with regard to children with disabilities, such as the term “invalid”, which can lead to their prejudice and stigmatization and negative psychological effects [38-44].

According to a study by the Swedish Association for International Assistance of People with Disabilities on the status of families with children with disabilities in Chisinau, only 25% of them were trained by a school teacher. Thus, parents who have children with disabilities must choose between placing the child in a residential institution, where the child will live separately from the family, community and children without disabilities, or caring for them at home, without support services [43].

Children with physical disabilities in the Republic of Moldova and their families face extreme difficulties when trying to move from one space to another. Most locations do not have special access ramps. Roads and sidewalks are not properly adapted and public transport is not accessible to people with disabilities. These conditions create barriers to access in public institutions, such as hospitals, health centers or schools.

However, the main disadvantageous factor is the attitude of children and adults without disabilities towards children with special needs, which, in most cases, is reserved or even negative. This fact makes children with special needs have difficulty integrating into general schools. According to the UNICEF data, about 6,000 children with disabilities in the Republic of Moldova do not have access to education. Schools are not adequately equipped for these students needs and the society is not prepared for the integration of children with special needs [39, 42].

People with disabilities have become the subject of social assistance in the Republic of Moldova with the advent of support services, developed by state institutions and non-governmental organizations. Although families, who care for children with disabilities, receive monthly allowances, they do not cover essential needs, healthcare costs or other necessary services. Unfortunately, our country does not provide the necessary support for families with such children. In most cases children with disabilities do not have access to education, receiving education only from parents, or are placed in residential institutions. The high cost and lack of medical equipment, medicines and food, the lack of specialized services can also be factors that affect the quality of life of many children with disabilities [41-44].

There is little information on the number of children with disabilities living in biological families and the quality of their life. The study of the Swedish Association for the International Assistance of Persons with Disabilities found that about 50% of the families questioned received assistance from the Municipal Department for the Protection of Children`s Rights in Chisinau and only 20% of them obtained assistance from the Social Assistance Directorate. Children with mental or behavioral disabilities are uncooperative and anxious and, despite the fact that sophisticated and long-term treatment could have positive effects, there are a small number of practitioners in the Republic of Moldova who apply these techniques and can diagnose and treat children with disabilities. Lack of parental trust in the value and success of the interventions could create barriers to proper treatment [43].

The Soviet legacy, namely, the modest efforts of the state to care for children with disabilities and social discrimination have led to social inclusion failure and lack of promotion of the interests of children and persons with disabilities in the Republic of Moldova. Separation from the society deepens the differences between children with disabilities and those without disabilities, perpetuating the perception that they should be educated and raised separately. Rejection and stigmatization affect not only people with disabilities, but also members of their families, being frustrated by the attitude their children are treated in the society [38].

Separation and discrimination as well as obstacles faced by children with disabilities represent violations of the Constitution of the Republic of Moldova and national legislation. Social services and protection programs should support the unique needs of this category of children and eliminate inequalities. In order to succeed in the process of deinstitutionalizing children with disabilities, it is necessary to develop inclusive education programs and standards for such children and changes in the attitudes of the society. Children without disabilities, teachers, parents, school administration representatives and public authorities must treat children with disabilities as equal members and with full rights of the community and protect their rights when they are not respected. It is necessary to take similar steps to extend the inclusion of persons with disabilities in all activities of the society [34, 38-44].

However, the real situation of people with disabilities is far from favorable. Most people with disabilities daily face social, medical or political barriers, being often discriminated. Every tenth person lives in a residential institution, being deprived by the right to have a family. The discriminatory attitude towards people with disabilities is a consequence of the devaluing policies of the state in the field. Being considered sick and powerless, these people are practically excluded from the education system, are violated by the right to be employed, and as a result – they are regarded as a burden on the social protection system [39]. At present, the situation of persons with disabilities in our country is problematic, as joint efforts of both the government and society as a whole are needed in the allocation of sufficient resources to increase access to health care and improve its quality granted to persons with disabilities [38- 40].

Access to education and health services is considered a fundamental right of the individual. The renewed commitment to a barrier-free Europe based on the effective implementation of the United Nations Convention on the Rights of Persons with Disabilities is reflected in the 2010-2020 European Strategy for People with Disabilities. In order to promote the inclusion of people with disabilities, eight common areas of action have been identified between the EU and member states: accessibility, participation, equality, employment, education and professional training, social protection and last but not least – health. Thus, persons with disabilities should must benefit, on equal terms, from access to medical services, including dental care. In order to guarantee the principle of equality, medical services must be free or provided by the state, and those on payment basis should have accessible prices, adapted to the specific needs of persons with disabilities [48].

In our country, Law no. 88 of May 29, 2014 for amending and completing article 20 of the Law on health care no. 411-XIII of March 28, 1995, (Published: 20.06.2014 in the Official Monitor No. 160-166 art. No: 355) which provides full dental care for children up to 12 years of age, except for prosthetic works and dental restoration [51]. The population impoverishment, especially families caring for people with disabilities, has generated a number of forms of social exclusion from health services, especially from dental care. At present, social inequality and polarization of access to these services are also manifested by large differences between the urban population, with rapid access to medical and rural services, with problems of access to primary and specialized services. Accessing specialized services involves going to specialized medical centers, which requires time and financial resources [52].

The socio-economic level of the family influences the child’s level of health-centered knowledge and attitudes. A large number of studies report that children from families with good or very good socio-economic status have a significantly higher level of oral health status, compared to children with low socio-economic status [52-57]. Thus, studies conducted by Ten Cate J., 2001, have highlighted the existence of correlations between poor quality of life and poor oral status, most commonly associated with limited access to dental services [57].

To obtain objective data on the access of children with disabilities to dental care in the Republic of Moldova, 2315 children, their parents or caregivers were interviewed. Most children with disabilities came from disadvantaged families, with 2-6 children and poor living conditions: 52.35% of the children – from socially vulnerable families, and 42.33% – from families with an unsatisfactory material conditions [58-59 ].

Most of the children interviewed (85.67%) were placed in residential institutions. The causes of children institutionalization were diverse. The reasons for institutionalization of each child were taken into account. Thus, 95.63% of the children were institutionalized due to their health status and the inability of biological families to care for them. Material difficulties and unsatisfactory living conditions was one of the reasons for the institutionalization of 55.94% of children with disabilities. The deprivation of parental rights (caused by chronic alcoholism, maltreatment, neglect or official refusal of children, the associational way of life etc.) was the reason for the placement of 49.7% of children in residential institutions [58].

Of the total number of children interviewed, the majority (60.04%) had at least a dental consultation. In order to prevent oral diseases, only 7.8% of children sought dental care at the dentist [59]. As a result of inadequate dental care in children with disabilities, the proportion of complicated caries cases was 65.44% versus the proportion of subjects requiring oral cavity rehabilitation accounting for 76.85%. The prevalence of edentation constituted 42.51%.

Thus, dental care of children with disabilities is usually confined to solving emergency cases, and their treatment is performed only when seeking dental care. The cases of complicated caries and even simple caries are resolved by dental extraction, which subsequently leads to various complications: underdeveloped maxillofacial bones, dental-maxillary anomalies. Dental caries and its complications have had a very serious impact (31.31% of cases) and a serious influence (22.03% of cases) on the quality of life of children with disabilities. The main causes of the worsening of daily performances of children with disabilities were toothache (74.11%) and lack of teeth (59.36%) [59].

The major factors reducing the access of children with disabilities to dental care were: physical accessibility, “relational” and “emotional” factors, financial and informational accessibility factors.

1. Physical accessibility factors, reported by 71.77% of the children with motor disabilities and 71.51% of the visually impaired children (or caregivers) interviewed, were determined by the difficulties of access to the dental clinic and dental chair as well as difficulties to perform dental work. The limited access to the dental clinic was caused by the difficulties of moving the children with accentuated and severe visual deficiencies or in wheelchairs to them and in their premises, to radiography services and complementary diagnosis settings (lack of elevators, limited wheelchair maneuverability etc.). Another factor limiting access to dental services was the inability of children with disabilities to leave the wheelchair and to sit in the dental chair. In addition, its classic design does not ensure secure posture of patients with motor deficiencies and uncertain balance. Also, some dental procedures were constrained by the anatomical and functional features of patients with disabilities: body position, limited movements, including limited mouth opening, mouth breathing, macroglossia, hypersalivation, involuntary movements and seizures, impaired swallowing, increased vomiting reflex, the inability to remove saliva from the oral cavity, dental-maxillary anomalies and so on.

2. The “relational” and “emotional” accessibility factors were detected in 98.49% of people with mental disabilities, in whom a simple dental examination caused severe stress, which increased the risk of patient`s anxiety or even aggressive behavior. Therefore, the main problems reducing the access of patients with intellectual or multiple disabilities to the dental care were caused by their behavioral particularities as well as the reluctance of specialists to provide dental care to patients with disabilities due to the lack of training of dentists and dental assistants, due to a specific approach in handling persons with special needs.

3. The financial factors of accessibility, estimated in 96.73% of the respondents, were determined, on the one hand, by reduced financial resources or, most commonly, by the poverty that families of children with disabilities face and their inability to pay dental treatment costs. On the other hand, the dental treatment of patients with disabilities requires 2-5 times more time than healthy children, at least two sessions are needed only to create a trusting climate between the dental specialist and children with mental and behavioral disorders or autism, to persuade them to accept to be subject to dental treatment. The treatment of people with disabilities entails more dental materials, additional sources being needed to administer sedation or general anesthesia. The additional expenses (dental practitioner’s time, medical expenses, including the costs of dental materials and pharmaceutical preparations) are not taken into account when determining the price of a visit to the dentist within the medical services provided to the population. As a result, the sources allocated by the National Insurance Company in Medicine are not sufficient to cover the costs of providing quality dental care, the costs of the treatments being a burden for families or volunteering of dental specialists in the country in collaboration with international donors.

4. Factors of accessibility to information (information with educational health care message and health education programs). In residential institutions, children with disabilities regularly benefit from health education programs, although they are not permanently implemented. Poor oral health and lack of access to information was found in most children educated in the family, not being integrated into the society (98.49%). The parents were not aware of their children`s oral health, neglecting the oral cavity hygiene and preventive dental care. The cause of neglecting children`s oral health by parents or caregivers is the severity of psychosomatic diseases and the need for permanent care, oral health problems becoming a secondary concern, until some complications of dental-periodontal diseases appear. Thus, acute pain was usually the reason for the first visit to the dentist, which was resolved by dental extractions, significantly increasing the child`s stress and contributing to the formation of severe dental anxiety. Another problem was the lack of information adaptation with educational-health care message disseminated to the special needs of patients with hearing, vision and associated impairments [60].

Analysis of the study results argues the need for the initiation and implementation of oral health programs in pediatric settings with the application of modern means and methods of prevention and treatment of oral diseases, ensuring a decrease in the prevalence and incidence of the main dental diseases. Thus, the problem of optimizing dental care for children with disabilities, represents one of the most important tasks of pediatric dentistry and requires further study and development, indicating the need to carry out oral health programs with the application of modern means and methods of prevention and treatment of oral diseases, which will contribute to a decrease in the prevalence and incidence of major dental diseases[60].

Conclusions

Most literature sources in our country and abroad argue that disability is both a medical and social problem, and children who suffer from severe and accentuated deficiencies need specialized long-term medical care, and in some cases – throughout life. The ratification by the Republic of Moldova of the UN Convention on the Rights of Persons with Disabilities in 2010 laid the groundwork for a substantial reform in the field of social insurance for persons with disabilities in our country. However, the situation of persons with disabilities in our country remains problematic and joint efforts of both the government and the society as a whole are needed to increase access and improve the quality of healthcare provided to persons with disabilities, including dental care.