Abstract
People with disabilities globally represent an extraordinarily diverse group of people with varied unique needs and multifaceted challenges. Expanding understanding about prevention, diagnoses, and management of disabilities is an important step toward improving the quality of life and healthcare equity for families impacted by disabilities. Exploring primary and secondary prevention of disability goes hand in hand with recognizing how to diagnose and manage the primary condition and associated conditions. Equipping the community and family to help the members with disabilities thrive includes tapping into resources and expanding knowledge and experience with various disabilities.
TopThe Invisible Problem
There are major challenges in collecting reliable statistics on disabilities such as lack of consistent definitions and indicators of disabilities, disparities in methodologies used to gather data, poor quality studies, and cultural reasons for those with disabilities to remain hidden and silent. The World Bank (2021) estimates that 1 billion (15%) of the world’s population experience some form of disability. The burden is higher in developing nations. 110-190 million or 1/5 of those with disabilities have a significant disability. Many communities are not even aware of the people with disabilities in their midst because they remain hidden or are euthanized.
Women are particularly vulnerable to abuse and discrimination in health and reproductive rights, including forced sterilization (Human Rights Watch, 2012). More than 85% of disabled primary-age children who are out of school have never attended school (Mizunoya et al., 2016). General education policies to improve access to compulsory education often do not effectively include disabled children in education. Interestingly, disabled children confront the same difficulties in participating in education, regardless of their individual and socio-economic characteristics. Issues impacting school attendance include stigma, unwillingness of family to pay for the education of a child with disabilities, lack of physical accessibility or transportation, lack of one-on-one aides to help a student learn within the classroom, lack of accessible hygiene facilities, being perceived as unteachable, inadequate teacher training in special education, and the inability to measure up to non-disabled age-mates.
Public transportation globally often involves bicycle and motorcycle taxis, van taxis, and buses. Although there are rare urban settings where wheelchair accessible buses are available, globally wheelchair bound individuals struggle to access public transportation. A seemingly simple trip involves multiple helpers and travel mates who are willing to sit near them and help along the way. Human dignity is frequently violated as an individual with disabilities is lifted, often unceremoniously, onto a vehicle. Those with profound disabilities or those who lack a robust support system will simply stay home. This limits access to employment and school opportunities, social connections, attendance at religious gatherings, and access to health care.
Key Terms in this Chapter
Equipment Technicians: Fit equipment properly to an individual to be used safely and effectively.
Community-Based Rehabilitation: Services available to individuals with disabilities within their own community; community members or organizations take responsibility for assisting disabled people or their families.
Dimensions of Disability: Impairment, activity limitations, participation restrictions (Adapted from the World Health Organization, 2001 ).
Orthoticists: Make custom fitting (or off the shelf) orthotics or braces for various joints to help with stretching and support. Common braces include Ankle Foot Orthosis (AFOs), body jackets (scoliosis), wrist orthosis, and supramalleolar orthoses (SMOs - shorter foot braces).
Status Epilepticus: A medical emergency consisting of seizure activity lasting longer than 5-30 minutes or two or more clustered seizures without recovery between seizures.
Primary Prevention: Preventing the disease or injury that originally causes disability.
Aspiration: Breathing in foreign objects (such as food, drink, or saliva) into the airways.
Handicap: A disadvantage that makes it difficult to fulfill a life role.
International Classification of Functioning, Disability, and Health (ICF): A classification of health and health-related domains established by the World Health Organization (2001) for measuring health and disability at the individual and population levels.
Disability: A functional limitation; any condition of the body or mind that makes it more difficult for the person to do certain activities and interact with the world around them.
Secondary Prevention: Prevention of secondary disability or a disability resulting from a primary condition.
Orthotics: Hard plastic braces designed to hold a joint in a specific position, correct biomechanics, or reduce pain.
Rehabilitation: The process by which disability is minimized but not eliminated.
Impairment: A loss or abnormality in a structure or organ.