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Children with disabilities

Children with disabilities: concept of disability, definitions, categories, causes, rights, health and community care, prevention, community-based rehabilitation.

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Children with disabilities

  1. 1. Prof. Dr. Soha Rashed
  2. 2. What is disability? and who are people with disabilities?
  3. 3. The Convention on the Rights of Persons with Disabilities (UN, 2006) describes people with disabilities as “…those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others”.
  4. 4. Disability Evolution of the concept. To understand how disability is currently viewed, it is helpful to look at the way the concept of disability has evolved over time. Historically, disability was largely understood in mythological or religious terms, e.g. people with disabilities were considered to be possessed by devils or spirits; disability was also often seen as a punishment for past wrongdoing. These views are still present today in many traditional societies.
  5. 5. Evolution of the concept (Cont.) In the 19th and 20th centuries, developments in science and medicine helped to create an understanding that: disability has a biological or medical basis, with impairments in body function and structure being associated with different health conditions. This medical model views disability as a problem of the individual, and is primarily focused on cure and the provision of medical care by professionals.
  6. 6. Biological/medical perspective Disability has been classified by the WHO as part of a continuum of stages of disease impact that include: Disease consequences
  7. 7. Examples Impairment (Abnormal organ function) Disability (Activity Limitations) Handicap (Participation Restrictions) Cataract: Prevents the passage of light and sensing of form, shape, and size of visual stimuli Inability to read or move around Exclusion from school Delayed speech-language development Inability to speak clearly enough to be understood Defective communication with others Motor deficits, imbalance, joint stiffness Inability to perform activities of daily living such as dressing, feeding, walking Dependence, immobility
  8. 8. Evolution of the concept (Cont.) Later, in the 1960s and 1970s, the individual and medical view of disability was challenged, and a range of social approaches were developed, e.g. the social model of disability. These approaches shifted attention away from the medical aspects of disability and instead focused on the social barriers and discrimination that people with disabilities face. Disability was redefined as a societal problem rather than an individual problem, and solutions became focused on removing barriers and social change, not just medical cure.
  9. 9. Current definitions • International Classification of Functioning, Disability and Health (ICF), which states that disability is an “umbrella term for impairments, activity limitations or participation restrictions” , which result from the interaction between the person with a health condition and environmental factors (e.g. the physical environment, attitudes), and personal factors (e.g. age, gender and coping mechanism). • Convention on the Rights of Persons with Disabilities, which states that disability is an evolving concept and “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.
  10. 10. People’s experiences of disability are extremely varied There are different kinds of impairments, and people are affected in different ways:  Some people have one impairment, others multiple  Some are born with an impairment  While others may acquire an impairment during the course of their life. For example, – a child born with a congenital condition, such as cerebral palsy – a young soldier who loses his leg to a landmine – a middle-aged woman who develops diabetes and loses her vision – an older person with dementia
  11. 11. May all be described as people who have disabilities
  12. 12. Global statistics about people with disabilities • Approximately 10% of the world’s population lives with a disability. • An estimated 80% of people with disabilities live in developing countries. • An estimated 15-20% of the world’s poorest people are disabled. • No rehabilitation services are available to people with disabilities in developing countries. • Only 5-15% of people with disabilities can access assistive devices in the developing world. • Children with disabilities are much less likely to attend school than others. • People with disabilities tend to experience higher unemployment and have lower earnings than people without disabilities .
  13. 13. Global trends Globally, the most common causes of disability include:  chronic diseases (e.g. diabetes, cardiovascular disease and cancer);  injuries (e.g. due to road traffic accidents, conflicts, falls and landmines);  mental health problems;  birth defects;  malnutrition; and  HIV/AIDS and other communicable diseases.
  14. 14. Global trends (Cont.) It is very difficult to estimate the exact number of people living with disabilities throughout the world, however the number is increasing due to factors such as:  population growth,  increase in chronic health conditions,  the ageing of populations, and  medical advances that preserve and prolong life. Many low and middle-income countries face a double burden, i.e. they need to address both traditional problems, such as malnutrition and infectious diseases, and new problems, such as chronic conditions.
  15. 15. Categories of childhood disabilities • Some children will be born with a disabling health condition or impairment, • while others may experience/acquire disability (after birth) as a result of chronic illness, injuries, mental health problems; birth defects; malnutrition; and communicable diseases, etc.
  16. 16. Categories of childhood disabilities • Physical disabilities: e.g. Traumatic Brain injury, spinal cord injury, cerebral palsy, epilepsy, neural tube defects, muscular dystrophy, poliomyelitis, congenital or acquired musculoskeletal deformities • Cognitive/Intellectual disabilities: e.g. Mental retardation. • Emotional/behavioral disorders: e.g., Anxiety, depression, phobias, conduct disorders, attention deficit hyperactivity disorder (ADHD) • Sensory disabilities:  Visual impairment (non-correctable vision problems): e.g. partially sighted, blind)  Hearing impairment: e.g. partial or complete hearing loss (deafness)  Speech-language disorders (which have an adverse effect on the child educational performance)
  17. 17. Categories of childhood disabilities (Cont.) • Autism: A disorder of neural development characterized by impaired social interaction, verbal and non-verbal communication, and by restricted and repetitive behavior. • Specific learning disabilities: e.g., Reading, writing, math. • Chronic health conditions: e.g. Asthma, TB, Juvenile DM, Rheumatic heart disease, Congenital heart disease, and malignancies.
  18. 18. Causes of childhood disabilities •Prenatal causes •Perinatal causes •Childhood causes
  19. 19. Prenatal causes 1. Chromosomal abnormalities: e.g., Down syndrome 2. Genetic causes: e.g: Sickle cell disease. 3. Rh-incompatability: This occurs in Rh-positive father and Rh-negative mother. The mother's blood begins to form antibodies against the "foreign" positive Rh factor. This results in hemolysis of RBCs, that may be limited causing only mild anemia, or excessive causing cerebral palsy, deafness, mental retardation, heart failure or even death. 4. Maternal stress: Prolonged emotional stress during pregnancy may have consequences on the child such as low birth weight, hyperactivity and irritability.
  20. 20. 5. Environmental causes: Most birth defects occur within the first trimester of pregnancy. • Exposure to x-ray radiation. The greater danger for malformation comes between the 2nd and 6th weeks after conception. • Teratogenic drugs: Teratogens are drugs producing birth defects. These may include:  Legal drugs (Nicotine, caffeine),  Prescription drugs (Certain antibiotics such as tetracycline, streptomycin, and sulfonamides, Chemotherapy drugs, Anticonvulsant/seizure drugs, tranquilizers and anti-anxiety drugs, Non-steroidal anti-inflammatory,and  Illegal drugs (Cocaine, heroin, marijuana).
  21. 21. • Teratogenic chemicals and environmental pollutants: e.g., Alcohol, Lead, Mercury, Arsenic, Cadmium, Pesticides and Organic solvents • Maternal nutrition: e.g., deficiency of folic acid is a risk factor for having a baby with spina bifida. • Infections contracted during pregnancy can also have a teratogenic effect, causing a variety of birth defects. E.g., Rubella, chickenpox, cytomegalovirus (CMV), and various sexually transmitted diseases (such as AIDS, Gonorrhea , Syphilis and Herpes) are some common examples.
  22. 22. 6. Maternal diseases and disorders during pregnancy: Children whose mothers had severe toxemia in pregnancy have a risk of lowered intelligence. 7. Age of the mother: Teenage mothers have a greater risk to have babies with low birth weight and neurological defects. Mothers over 40 have an increased risk of having children with chromosomal abnormality.
  23. 23. Perinatal causes • Drugs taken during labour and delivery: e.g., some painkillers. • Prematurity: this is more common among economically deprived mothers. In addition, smoking, alcohol and various drugs increase the likelihood that the baby will be premature. • Oxygen deprivation: brain haemorrhage and failure to breathe are the main causes of oxygen deprivation (more likely to occur with prolonged labour and birth asphyxia) resulting in motor deficits • Birth injuries: e.g., brain damage, Erb's paralysis • Neonatal infections: e.g., neonatal septicemia, neonatal meningitis • Congenital anomalies
  24. 24. Childhood causes • Injuries • Childhood infections: Postnatally acquired meningitis and encephalitis • Severe and prolonged malnutrition can adversely affect both physical growth and mental development of the child
  25. 25. • Environmental deprivation: For some children environmental deprivation has a debilitating effect on the development of abilities such as language use, adaptive behavior, and cognition. Deprivation can include poor nutrition, poor housing, broken families, lack of social interaction and limited opportunity for varied experiences.
  26. 26. What are the rights of children with disabilities? • The Egyptian Convention on the Rights of the Child (CRC) applies to all children, including children with disabilities. • It spells out the basic human rights that children everywhere have: the right to survival; to develop to the fullest; to protection from harmful influences, abuse and exploitation; and to participate fully in family, cultural and social life. It also recognizes the importance of family assistance and support. • Protection from discrimination and provision of adequate targeted services (by national parties) are additional rights specified for children with disabilities.
  27. 27. What factors affect child development? Children’s development is influenced by a wide range of biological and environmental factors, some of which protect and enhance their development, while others compromise their developmental outcomes. Threats/dangers facing disabled children. Children who experience disability early in life can be disproportionately exposed to risk factors such as:
  28. 28. poverty; stigma and discrimination; poor caregiver interaction; institutionalization; violence, abuse and neglect; and limited access to programmes and services, all of which can have a significant effect on their survival and development.
  29. 29. Why support the development of children with disabilities? Evidence-based research and multi-country experiences make a strong rationale for investing in Early Childhood Development (ECD), especially for children at risk of developmental delay or with a disability. Human rights rationale: all children with disabilities have the right to develop “to the maximum extent possible”. These instruments recognize the importance of focusing not only on the child’s health condition or impairment, but also on the influence of the environment as the cause of underdevelopment and exclusion. Economic rationale: Children with disabilities who receive good care and developmental opportunities during early childhood are more likely to become healthy and productive adults. This can potentially reduce the future costs of education, medical care and other social spending.
  30. 30. Why support the development of children with disabilities? Scientific rationale: The first three years of a child’s life are a critical period. They are characterized by rapid development particularly of the brain and thus provide the essential building blocks for future growth, development and progress. If children with disabilities are to survive, flourish, learn, and be empowered and participate, attention to ECD is essential. Programmatic rationale: ECD programmes can lead to improved rates of survival, growth and development; and ensure later education programmes are more effective. Well-organized inclusive ECD programmes for young children with disabilities can provide parents with more time to engage in productive work and enable girls and boys with disabilities to attend school. Approaches combining centre-based programmes and parenting interventions, including home visiting programmes, may help parents and professionals to detect developmental delays early, improve children’s development, prevent abuse and neglect, and ensure school readiness.
  31. 31. How can we support the development of children with disabilities? Promoting development in young children with disabilities requires a twin-track approach. This approach recognizes that:  children with disabilities and their families have ordinary needs and must have access to mainstream programmes and services such as health care, child care and education, and  also may need access to targeted services such as ECI. Building on existing health and education service structures for all children is essential, avoiding as much as possible the organization of separate and/or parallel services.
  32. 32. Early Childhood Intervention (ECI) ECI programmes are designed to support young children who are at risk of developmental delay, or young children who have been identified as having developmental delays or disabilities. ECI comprises a range of services and supports to:  ensure and enhance children’s personal development and resilience,  strengthen family competencies, and  promote the social inclusion of families and children.
  33. 33. Early Childhood Intervention (ECI) Examples include specialized services such as:  medical  rehabilitation (e.g. therapy and assistive devices)  family-focused support (e.g. training and counselling)  social and psychological  special education Along with:  service planning and coordination  assistance and support to access mainstream services such as preschool and child-care (e.g. referral) Settings. Services can be delivered through a variety of settings including:  primary health-care clinics (MCH, Family health units/centres)  hospitals  early intervention centres  rehabilitation centres  community centres  Homes  schools
  34. 34. Early Childhood Intervention (ECI) A comprehensive approach is required for appropriate care and support including: early identification; assessment and early intervention planning; provision of services; and monitoring and evaluation. A life-cycle approach to programming provides a helpful framework to identify priority and sustainable interventions during the early childhood stage and to ensure a continuum of quality care, health services, protection and education as a child transitions from birth into and through the first grades of primary school. In addition, the life-cycle approach provides the foundation for organizing the roles and responsibilities of each sector in support of children and their families, aimed at guaranteeing a more holistic assistance plan while reducing potential duplication of services. A wide range of sectors should be involved in and share responsibility for identifying children with disabilities, providing ECI services and guaranteeing support for their families.
  35. 35. • Community-based rehabilitation (CBR) has also been one of the major approaches to addressing the needs of children with disabilities. This approach empowers children and their families by bringing together communities and government and non-government health, education, vocational, social and other services. Further efforts should be made to ensure community-based approaches become an integral part of national health and education systems, policies and services.
  36. 36. Mission: “to empower people with disabilities, their families and communities (regardless of colour, faith, religion, gender, age, type and cause of disability) through raising awareness, promoting inclusion, reducing poverty, eliminating stigma, meeting basic needs and facilitating access to health, education and livelihood opportunities”.
  37. 37. Five components of CBR A broader multi-sectoral development strategy
  38. 38. The key activities of the CBR programme include: • Training family and community members on disability and CBR using the WHO CBR training manual as a guide • Providing educational assistance and facilitating inclusive education through capacity building with teaching staff and students, and improving physical access • Referring people with disabilities to specialist services, e.g. surgical and rehabilitation services, where physiotherapists, speech therapists and occupational therapists are available
  39. 39. The key activities of the CBR programme (Cont.) • Providing assistive devices, e.g. walking sticks, crutches, wheelchairs, hearing aids, glasses • Creating employment opportunities by providing access to training, job coaching and financial support for income-generation activities • Providing support for social activities including sports and recreation • Providing financial assistance for living, education and home modifications.
  40. 40. Prevention of disability
  41. 41. Prevention of childhood Disabilities I- Primary prevention: Identification and preventing/minimizing the risk factors.  Genetic counseling: Genetic screening, estimation of risk and counseling prior to conception is important for the control of genetically- determined disabilities.  Premarital examination and Pre-pregnancy planning: as checking medical conditions of women, Rh factor, infections such as venereal diseases and rubella immunization  Improved prenatal, natal and postnatal care.  Pregnant woman should also maintain good physical health throughout her pregnancy, which means eating a well-balanced diet, exercising, and allowing herself plenty of rest.
  42. 42.  Immunization programs : e.g., poliomyelitis and meningitis  Prevention and control of environmental pollution: to reduce/minimize the risk of exposure to dangerous environmental teratogens.  While not all birth defects can be prevented, there are precautions a woman can take to protect herself and her baby from dangerous environmental teratogens and reduce the risk of birth defects. Important preventative measures include avoiding the inhalation or ingestion of harmful chemicals or substances. Pregnant women should specifically avoid un-prescribed medications.
  43. 43. II- Secondary prevention: Early identification and intervention Some health conditions associated with disability may be detected during pregnancy where there is access to prenatal screening, while other impairments may be identified during or after birth. e.g., Neonatal screening for congenital hypothyroidism (carried out on the 3rd day after delivery). Specific treatment is given for positive cases to prevent mental retardation. Screening or surveillance of children’s development may take place during visits to child health-care facilities (e.g., MCH centres and Family health units/centres); there may be targeted early identification procedures in place, such as screening for visual and hearing impairments in health-care or education settings; and public health activities, such as immunization campaigns, may also provide opportunities for early identification. Some families may also become concerned about their child’s development if there are delays in the achievement of key developmental milestones such as sitting, walking or talking.
  44. 44. III- Tertiary prevention: Rehabilitation Limiting or reducing the effects of the disability (that is already present), and preventing its development into a handicap. Main aims are: - To increase awareness of disabilities and the needs of disabled children - To stimulate a more understanding and supportive attitudes (at both family and community levels) - To support and maximize their development potential (optimize their functioning). - To reduce burden on family/care-givers - To encourage the full integration of disabled individuals in society Rehabilitative (Specialized/Targeted) services may include: medical; rehabilitation (e.g. therapy and assistive devices); family-focused support (e.g. training and counseling); social and psychological; and special education, along with service planning and coordination; assistance and support to access mainstream services such as preschool and child-care (e.g. referral). ECI
  45. 45. AN EXAMPLE OF COGNITIVE (INTELLECTUAL) DISABILITIES MENTAL RETARDATION Definition. Mental retardation implies significant deficits, with onset early in life, in intelligence (as measured by standardized intelligence tests) and in adaptive behavior (e.g., communication, self-care, social interaction, school, and/or work). The deficits are recognized in the performance of social roles and age-appropriate tasks. The infant and preschool child may fail to achieve developmental milestones of sitting, responding to familiar faces, walking, talking, and sphincter control at expected ages. The schoolchild falls short of social expectations for classroom behavior and for reading, writing, and arithmetic. The adult may have difficulty in performing work within and outside the home, communicating, or understanding money, transport, and locality.
  46. 46. Functional limitations in mental retardation can potentially be identified at three levels: • Impairment: altered brain structure and/or function, • Disability (activity limitations): deficits in intellectual function and adaptive behavior, and • Handicap (participation restrictions = problems with involvement in social roles): e.g. school failure or poor performance at work.
  47. 47. Classification of mental retardation
  48. 48. Prevention of mental retardation 1. Genetic counseling, prenatal diagnosis, early identification, and proper treatment are important in preventing mental retardation of genetic origin. 2. Prevention of infections and parasitic diseases contributes significantly to the prevention of mental retardation. 3. Monitoring the environment to protect against pollutants and other chemical and physical hazards is an important part of prevention programs. 4. Safe environments for young children and the prompt treatment of injuries should reduce accidental causes of mental retardation. 5. Sound nutrition of mothers and children.
  49. 49. Prevention of mental retardation 6. Good obstetrics and good care of the newborn reduce the incidence of mental and physical handicap. Good care includes adequate treatment of maternal illness, such as diabetes or toxemia; prompt recognition of obstetrical abnormalities; adequate monitoring of the fetus; immediate resuscitation of the infant; and prediction, prevention, and treatment of biochemical disorders, respiratory distress syndrome, hypoglycemia, anoxia, and all causes of cerebral damage.
  50. 50. Prevention of mental retardation 7. Social and educational stimulation is essential for proper mental growth and development. It is an important element in preventing mental retardation, especially mild mental retardation. Suitable interventions are needed for children whose families do not provide this stimulation. 8. In more severely retarded persons, proper stimulation, modern principles of rehabilitation, and good remedial service can also reduce disability and prevent the development of secondary handicaps. 9. Improving living standards and the general health of the population constitutes an important element of nonspecific prevention of mental retardation. Preventive programs for mental retardation should be an integral part of all general health planning and programs.

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Children with disabilities: concept of disability, definitions, categories, causes, rights, health and community care, prevention, community-based rehabilitation.

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