Community-Based Intervention for Differently Abled People

Abstract

Disability has been accepted to be a global phenomenon and a condition that requires effort and attention from the different parts of the society. Community, in which a person with disability lives, can play an effective role by a participative attitude as well as by being aware of their significant role. In this chapter, we discuss evolution of disability as a concept, the magnitude of disability in Indian context, the ways and procedures adopted in disability assessment (both general and specific procedures), the nuances of community-based rehabilitation program, the role of different parts of community in managing disability, the challenges that the community may face in imparting effective services to the persons with disability, and the legislations that emphasize the role community in this context. In each section, an attempt has been made to bring out the variety of roles that the community can play in bringing about effective mainstreaming of this population. We conclude the chapter with a list of recommendations as care and support services to persons with disabilities involve resources and revisions at multiple levels. This needs help from many stakeholders, apart from the main caregivers like communities around, local bodies of the government and other organizations that can provide infrastructural, economical, and legal aids to these people.

Defining Disability

Disability is an umbrella term covering impairments, activity limitations, and participation restrictions (WHO, 2009).

• (1) Impairment is a problem in body function or structure.

• (2) Activity limitation is a difficulty encountered by an individual in executing a task or action.

• (3) Participation restriction is a problem experienced by an individual in involvement in life situation

International Labour Organization (ILO) looks at a disabled person as an individual “whose prospects of securing, retaining, and advancing in suitable employment are substantially reduced as a result of a duly recognized physical or mental impairment”. Definition of disability, according to Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, includes seven broad categories related to blindness, low vision, hearing impairment, mental retardation and mental illness, and locomotor disability; whereas mental illness means any mental disorder other than mental retardation, mental retardation means a condition of arrested or incomplete development of the mind of a person, which is specially characterized by subnormality of intelligence.

More often than not the definitions of disability are based on the perspective with which the disability is viewed. Thus, disability as a concept has evolved as models of disability have been modified (Retief & Letsosa, 2018). We will discuss some of the models in this section.

Medical Model: This model treats disability as a disease and advocates that the nature of disability is individualistic as the problem lies in the functioning of a particular body system within a person. It demarcates differences between a disabled person and able-bodied person wherein the latter is projected to be a better-equipped individual. The intervention module thus adopted focuses on eliminating the disability and the person to change rather than changing the environment that the person is living in. Also, in this model, the person with disability is expected to play a “sick role” that may or may not be true in reality.

Social Model: According to this model, disability is a social construct shaped by the notions and attitudes of the society that a person is residing in. People have impairments, but the attitude and the meaning ascribed by the society to these impairments is what constructs disability. Thus, the physical and social environment poses limitations on persons with disabilities, and this is what needs to be changed so that the disability can be managed effectively. This model has significant implications for enacting and reforming policies that can improve the life experiences of persons with disability.

Identity Model: According to this model, the impairment forms an important part of the identity of the person that needs to be embraced and positively acknowledged. This model allows persons with disabilities to identify as a group that has the freedom to choose to be a part of the mainstream society or to exist as an independent community.

Human Rights Model: This model goes beyond social model in terms of establishing the dignity of persons with disability providing a blueprint for the policies based on theories and facts associated with the living conditions of these people. It helps to establish both cultural and political identities of the person with disability. It offers solutions for the challenges faced by these individuals rather than just describing them.

Limits Model of Disability: This model proposes the concept of “Limitness” where disability is perceived as one of the variety of limits that all human beings have but still live a regular life. It emphasizes on similarity of experiences that an able-bodied person shares with a disabled person, thus collecting evidence that all human beings with limits are a part of the society. All of us have the freedom to choose the actions to overcome the limitness possessed in varying degrees.

Magnitude of the Problem

India is a part of many International Commitments that emphasize on regulating and managing disability. These are as follows:

• (1) Declaration on the Full Participation and Equality of People with Disabilities in the Asia Pacific Region’ (2000).

• (2) UN Convention on the rights of Persons with Disabilities’ (2008).

• (3) Biwako Millennium Framework’ (2002).

• (4) The Sustainable Development Goals (2015).

These initiatives require the foundation of comprehensive statistics to build on and reach the maximum number of persons with disability. The survey to understand these statistics is carried out by the Decennial Population Census (Office of the Registrar General and Census Commissioner) and National Sample Survey Office (NSSO). In Census 2011, the data was collected on eight types of disability. It showed that 20% of the disabled persons are having disability in movement, 19% are with disability in seeing, and another 19% are with disability in hearing. About 8% have multiple disabilities. Males are more in number among the affected for all the types of disability. 17% of the disabled population is in the age group 10–19 years, and 16% of them are in the age group 20–29 years. The Census 2011 showed that, in India, 20.42 lakhs children aged 0–6 years are disabled. This figure is a matter of concern and needs to be paid special attention to. Among the total disabled persons, 45% are illiterates. 13% of the disabled population has matric/secondary education but are not graduates and 5% are graduates and above. Nearly 8.5% among the disabled literates are graduates. One in every two disabled non-workers is dependent on their respective families. Among the male disabled non-workers, nearly 33% are students, while the same among the corresponding category of females is 22%. In totality, Uttar Pradesh has the highest number of disabled population, whereas Bihar has the highest number disabled population when it comes to children (Chandramouli and General, 2011). The States of Kerala and Goa have the highest literacy rate among the disabled persons (70%). The lowest literacy rate among the disabled persons is reported from Arunachal Pradesh (38.75%) followed by Rajasthan (40.16%) (Census, 2011). There have been many independent researches in India to understand the population dynamics when it comes to disability. For example, Kumar et al., (2008) conducted a community-based cross-sectional study to understand the pattern of mental disability in rural Karnataka. The prevalence of mental disability was found to be 2.3%. The prevalence was higher among females (3.1%) than among males (1.5%). Kumar et al. (2012) in their systematic review contended that disability in India follows an iceberg phenomenon where there is more to the problem than the numbers that are actually presented in front of us. The variation in prevalence of disability is observed due to social attitudes and stigma, international evidence, gap driven by mental retardation, and mental health measurement.

In fine, disability is an umbrella term covering impairments, activity limitations, and participation restrictions. More often than not the definitions of disability are based on the perspective with which the disability is viewed. These are medical model, social model, identity model, human rights model, and the limits model. India is a part of many International Commitments that emphasize regulating and managing disability. The variation in prevalence of disability is observed due to social attitudes and stigma, international evidence, gap driven by mental retardation, and mental health measurement.

Developmental Disorders

Developmental disorders are a heterogeneous group of conditions that show its effect in one or more areas of developmental patterns whether it be physical, cognitive, or social in nature. DSM V has renamed this group of conditions as neurodevelopmental disorders. This is an umbrella term that includes intellectual disability, learning disability, autism spectrum disorder, attention deficit hyperactive disorder, and developmental coordination disorder.

• (1) Intellectual disability is a term used to refer to a condition where the individual has compromised cognitive development and is lower than that of their counterparts of the same age.

• (2) Learning disability is a group of conditions where the problem lies in specific areas of language like reading, writing, spellings, and mathematics.

• (3) Autism spectrum disorders are a group of conditions where the social communication and development of an individual is compromised and is characterized by behavioral difficulties.

• (4) Attention deficit hyperactive disorder is a condition where an individual is impulsive, not able to focus attention and hyperactive in nature. These three conditions might occur simultaneously or in isolation in the individual.

• (5) Developmental and coordination disorder is motor disability where the problems occur in integrated motor movements, and thus, the individual might experience problems in both gross and fine motor skill development.

All developmental disabilities have both organic and social basis. In order to manage these in an effective manner, it is imperative that both of these are considered and included in the diagnosis as well as the intervention procedures. As observed, the developmental disorders are different in terms of the developmental areas affected in a person. But there are some commonalities between them. Though two individuals might be diagnosed with the same disability, their diagnosis and intervention will be different because of the difference in the degree of severity and the nature of comorbidity might be varied. These are lifelong conditions and can be managed but cannot be cured completely.

Disability Assessment

Disability is an area if managed at the correct and appropriate time can have a good prognosis. A very important part of this procedure is the assessment phase. Testing and assessment are many times used interchangeably, but there is a basic difference between the two terms. While testing gives one a measurement of a particular trait or entity, assessment is more holistic in nature. It is a battery of different methods undertaken to understand the problem and hence arrive at a solution. There are basically three categories of initial assessment followed when looking at disability. These are interviews, psychometric testing, and situational and functional assessment. All of them have their own advantages and disadvantages, and more often than not, they are used in combination with each other. Assessment becomes important in the following ways:

• Behavioral prediction.

• Helps in acquiring the knowledge of personality and support systems.

• To gauge the existing potential and abilities in an individual.

• To understand the organic basis of the condition.

• To evaluate the efficacy of an intervention.

The efficacy of these different types of assessment does not only depend on their robustness, but on the professionals involved in the administration and interpretation of these tests as well. A well-established test if handled by a not so equipped professional will not be beneficial to understand the condition of individuals. An ability to understand the condition involves theoretical understanding of disability, expertise to individualize the assessment procedures and sensitivity to cultural and social factors that surround this individual. Only a combination of the above mentioned factors can lead to successful and efficient assessment. Most studies used semi-structured questionnaires for measurement of disability.

IQ Assessment: This is basically done to understand the current level of cognitive functioning of the individuals. The IQ scores not only indicate the intelligence level but gap in the underlying process like lack of fluency in processing abilities and a slower automaticity of different perceptual activities (Geary et al., 2012). All this necessitates the requirement of a thorough IQ assessment which can include both verbal and non-verbal assessments.

Behavioral Therapy: Some persons with disability face a lot of behavioral problems ranging from physiological ill effects like reduced sleep to social problems like lack of self-confidence and inadequate communication patterns (Hamid, 2015). For example, about 24–52% of children with learning disorders present behavioral problems which can result from anxiety/stress, social isolation and can result in aggressive behavior (Diakakis et al., 2008). The root cause of such behavioral problems needs to be identified so that the prognosis for these people is more positive. Behavioral therapy, for children, is practiced on many levels in terms of classroom management and how effective and desirable behavior can be introduced and inculcated in the child.

Observation and Interview: Observation and interview are basically used as complementary procedures in order to understand the non-verbal behavior as well as the communication pattern of an individual. It proves to be powerful tool and can help in the subtle discrimination of the different disorders that are prevalent in children. These also provide the baseline data that can later be helpful in bridging the gaps that might remain unexplored in the other procedure utilized for diagnosis. These methods are not only done with persons with disability (PWD) but with primary caregivers and the other service providers of the PWD as well in order to get a holistic picture of the condition of the individual.

Screening and Psychometric Tests: Screening and psychometric tests are done to arrive at a universal score that will be interpreted in a similar fashion across different service providers. Choosing a psychometric test based on the baseline data and provisional diagnosis entails the expertise of a service provider, and the subsequent analysis and interpretation of the scores that can facilitate further steps to be initiated in the management of disability also involves professional skills. The screening and psychometric tests involve various areas for exploration. All these tests together can provide for a holistic picture of the condition of the person and help in providing quality services.

For disability assessment and management, various tools have been used. Some studies have used Barthel Index for Activity of Daily Living, Instrumental Activities of Daily Living, Indian Disability Evaluation and Assessment Schedule, Rapid Assessment of Disability scale, and Standard Health Assessment Questionnaire (Ramadass et al., 2018). Studies that used the International Classification of Functioning, Disability and Health concept for measuring disability reported prevalence ranging from 70.0% to 93.2%. The more popular ones are as follows:

• International Classification of Functioning, Disability, and Health: This is a global disability assessment schedule that includes information on the functioning and disability. It is approved by the World Health Organization (WHO). According to the ICF model, functioning and disability include broad areas of body functions and structures, the activities of people, participation of people in all areas of life, and environmental factors that affect these experiences. This tool is thus based on the biopsychosocial model of disability. Functioning is defined as “an umbrella term for body function, body structures, activities, and participation. It denotes the positive or neutral aspects of the interaction between a person’s health condition and that individual’s contextual factors”. Disability is defined as “an umbrella term for impairments, activity limitations, and participation restrictions.”. The ICF has eight components which are further arranged into hierarchical domains. These are as follows:

• Body Functions: The physiological functions of body systems (including psychological functions).

• Body Structures: Anatomical parts of the body such as organs, limbs, and their components.

• Impairments: Problems in body function and structure such as significant deviation or loss.

• Activity: The execution of a task or action by an individual.

• Participation: Involvement in a life situation.

• Activity Limitations: Difficulties an individual may have in executing activities.

• Participation Restrictions: Problems an individual may experience in involvement in life situations.

• Environmental Factors: The physical, social, and attitudinal environment in which people live and conduct their lives. These are either barriers to or facilitators of the person’s functioning.

The broad framework puts assessment in context and provides the focus for selecting relevant aspects of functioning and disability for assessment. Qualifiers are codes used to record the extent of functioning or disability in a domain or category or the extent to which an environmental factor is a facilitator or barrier. A uniform or “generic” qualifier scale is provided to record the extent of the “problem” in relation to impairment, activity limitation, and participation restriction as shown in Box 2. The environmental factors qualifier uses both a positive and negative scale, to indicate the extent to which an environmental factor acts as either a facilitator or barrier to functioning. Measurement is an area for further development, and it is recognized that the generic qualifier requires calibration to relate its scale to existing measurement tools (Table 22.1).

Table 22.1 ICF qualifier scales

• Barthel Index for Activity of Daily Living: This scale is basically used to monitor the progress of people with disability undergoing rehabilitation. Clients receive numerical scores based on whether they require physical assistance to perform the task or can complete it independently. Items are weighted according to the professional judgment of the developers. A client scoring 0 points would be dependent on all assessed activities of daily living, whereas a score of 100 would reflect independence in these activities.

• Indian Disability Evaluation and Assessment Schedule (IDEAS): IDEAS is widely used to measure and certify disability in our country. It has four items: self-care, interpersonal activities (social relationships), communication and understanding, and work. Each item is scored between 0 to 4, i.e., from no to profound disability, and adding scores on four items gives the “total disability score”. Global disability score is calculated by adding the “total disability score” and MI2Y score (months in two years—a score ranging between 1 and 4, depending on the number of months in the last two years the patient exhibited symptoms). Global disability score of 0 (i.e., 0%) corresponds to “no disability”, a score between 1 to 7 (i.e., <40%) corresponds to “mild disability”, and a score of 8 and above corresponds to >40 percent corresponds to moderate to profound disability (Mohan et al., 2005).

• Rapid Assessment of Disability Scale: This questionnaire was designed to ascertain the prevalence of disability in the target population and hence design intervention modules according to the identified needs. It is based on the conceptual frameworks of disability the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the International Classification of Functioning, Disability and Health (ICF). It has five Sects. (1) Demographic information, (2) Assessment of functioning, (3) Awareness of rights of people with disability, (4) Well-being and quality of life, (5) Participation in the community (Huq et al., 2013).

Developmental disorders are a heterogeneous group of conditions that show its effect in one or more areas of developmental patterns whether it be physical, cognitive, or social in nature. DSM V has renamed this group of conditions as neurodevelopmental disorders. It includes intellectual disability, learning disability, autism spectrum disorder, attention deficit hyperactive disorder, and developmental coordination disorder. Disability is an area if managed at the correct and appropriate time can have a good prognosis. A very important part of this procedure is the assessment phase. There are basically three categories of initial assessment followed when looking at disability. These are interviews, psychometric testing, and situational and functional assessment. For disability assessment and management various tools have been used. Some studies have used Barthel Index for Activity of Daily Living, Instrumental Activities of Daily Living, Indian Disability Evaluation and Assessment Schedule, Rapid Assessment of Disability scale, and Standard Health Assessment Questionnaire.

Key Stakeholders and Their Role in Disability Management

Role of Parents: When dealing with children with disabilities and their parents, it is important on the part of service providers to understand the culture that surrounds, the parenting practices adopted and understand the dynamics between the parent and the child. More often than not, primary caregivers are not aware of the support systems they already engage with. This perception consequently led to their lack of trust in their surroundings for social support (Washington, 2009). Parents have often emphasized that while accessing services for their children, they would like to receive information on good support practices for children at home, the physical and psychological health difficulties for themselves and their child, lack of social support experienced needs to be addressed, and they also experience hostility from their surroundings if they involve themselves in giving support facilities to their children with the service providers. These problems of parents are often unnoticed by the service providers (Chien & Lee, 2013). Indian parents also report a similar experience when it comes to taking care of a child with a disability. There is an increased burden on the care providers of children with intellectual disability because of very limited social support from family as well as the surroundings. There are a lot of misconceptions regarding children with intellect that further tends to isolate them from society. In order to minimize these observations, public awareness programs and community-based interventions have been suggested (Edwardraj et al., 2010). Also, those mothers who perceived more support reported better adjustment, and this adjustment was lower if the severity of the disability is higher. Thus, if the parents are able to find effective support in their surroundings they would be able to manage with disability in a more constructive manner (Pal et al., 2002). Thus, social support is one of the important factors that can mediate the frustration of parents and result in better care of their children.

Role of Service Providers: The antecedent factors which influence the role components include the demographic factors of the community and as well as the dynamics of the institution that the professionals work in. The other factors considered important were the professional expertise of the service providers, the family characteristics, and type of relationship between the service providers and the family. The circumstance and the environment in which these care coordinators work need to be taken into consideration when designing an intervention program, and also, the nature of interaction between these professionals and families needs to be explored (Hills et al., 2016). A transdisciplinary approach of care for PWD is effective, but lack of enough therapists, lack of psychological and professional family or social support, and lack of resources and equipment have been observed to be a barrier in this regard (Weatherill et al., 2012). In order to understand these, one needs to facilitate feedback and design strategies to facilitate better communication between all the stakeholders. In order for services to become effective, objective measures and their implementation need to be standardized, and community support needs to be encouraged (Darrah et al., 2012). The relationship with the community is important in terms of providing effective social support as well the support of service providers is required to successfully implement family-centered care. The role of service providers is very important in translating a framework into a significant contributor of quality care and support services to children attending early intervention programs (Fordham et al., 2012). Family-centered care has a lot of positive outcomes for service providers, children, and the parents. There are very few studies which include all the stakeholders in one study to understand the perception of family-centered care from all the perspectives. Family-centered care has not been explored in India in the context of disability. For a successful implementation of family-centered care, a trans-discipline care coordination is essential which will eventually benefit the quality of services offered to children with disability.

Role of Teachers: Though we have different systems of education available, up to 95% of children with disabilities are devoid of basic education. Most of the organizations that have special education are run privately, but the emphasis for the same comes from the government. Those disabilities that are considered low incidence disabilities in developed Countries are high incidence in developing countries because of how these are defined and the stigmatization surrounding these disabilities where a child with intellectual disability tends to be hidden. As a result of all these factors, misrepresentation of children with disabilities happens in India, and there is lack of reliable statistics (Kalyanpur, 2008). A combination of positive beliefs with behavioral control was observed to have positive outcomes in the context of practicing inclusive education. Also, teachers who believed that inclusive education is a part of school curriculum had higher chances of engaging in the same (MacFarlane & Woolfson, 2013). Pre-service teachers’ who had training, were aware of different intervention programs, had knowledge of policies and legislations and who were taught to deal with their concerns have better and positive attitudes towards including children with disability in Regular classrooms (Sharma et al., 2009). Variations in school systems across different states, the inadequate spending of funds in educational reforms by both state and central governments, disparities in education across different groups of children, and the enrollment of these children continue to be low in regular schools despite government initiatives. She observes that constructive work is being done in the field of inclusive education but the inadequacies have to be brought into light as well as persons with disabilities lack the support of effective policies. The focus on the child and not the system has been pointed as one of the reasons for this observation (Singal, 2006). Preparation is needed at different levels like preparing the children for getting included in regular classrooms like formulating bridge courses, preparing the mainstream schools for receiving children with disability like giving specialized training to teachers and preparing the parents for the same. These facilities are limited and have been imposed in only some states like Uttar Pradesh and Andhra Pradesh. The resources in the organizations, where inclusive education is functional, are scarce and poor. Hence, constructive work is needed to address these issues (Sanjeev & Kumar, 2007). Programs like District Primary education Program, Janshala, and Sarva Shiksha Abhiyaan suffer from problems like lack of effective data, lack of disability indicators, and ineffectiveness in addressing their proposed objectives as well as financial constraints. Though some schools advocate that they have inclusive education, an examination of the same was found to be contrary and very different from that of the conventional concept of inclusive education. The infrastructural constraints that schools have also interfere with the perception of including children in the regular school setups.

Role of Non-Governmental Organization: NGOs work in close association with the government for providing services to people with disabilities, technical assistance, and training of effective personnel for management of disability. However, their role in policy development has been observed to be minimal and under-explored. This is prevalent at both the central as well as the state level. The same has been the case with NGOs led by persons with disabilities. In this context, community-based rehabilitation programs can act as mediators between the NGOs and the general public. Development organizations like Poorest Area Civil Society (PACS) Program and World Bank are also showing interests in collaboration with disability NGOs for identifying and addressing the economic needs of people with disabilities in rural areas and helping in their rehabilitation. A combined effort of the NGOs can ensure a stable and continued implementation of the various initiatives provided by the government. This would further strengthen the disability movement. Another area where the role of NGOs is significant is in terms of interaction with communities. For example, Mamta Punarvas Kendra NGO in Shri Ganganagar district of Rajasthan NGO has worked in one block to sensitize sarpanchs, GP members, patwaris, and gram sevaks on disability issues, with field work for this report indicating that these efforts are already showing positive impact in implementation of poverty alleviation schemes.

Disability For a in Tamil Nadu

There is evidence of good collaboration among NGOS and between NGOS and the state in Tamil Nadu:

Vellore District Disability Network: 12 disability-related organizations meet quarterly to share resources for the rehabilitation of persons with disabilities. The District Disability Rehabilitation Officer is present and occasionally the Disability Commissioner

Disability Forum: A disability forum of 23 NGOs (disability-specific and development) is facilitated by the Organization for Development Action (ODA). This forum shares information, knowledge, and referrals between NGOs. There is reluctance by some organizations in this forum to lobby for change as they receive government support and are concerned about what impact their involvement may have on access to state resources. Hence, issues identified in this forum are used for lobbying the government directly by ODA and other interested parties

In August 2005, a State Resource Training Centre for PWD was set up in Chennai under the National Program for Rehabilitation of Persons with Disabilities (NPRPD). Different NGOs with disability-specific expertise are providing their voluntary services for training of persons with disabilities. The center will showcase good NGOS practices

A weekly radio program call Thiramaiyin Thisayil (In the Direction of Your Abilities) is broadcast by Ability Foundation in association with all-India radio. It focuses on issues and policies which affect the rights of PWD. Other NGOs also use the show as a vehicle for spreading information on vocational training programs and to publicize events such as job fairs. Letters and responses from remote rural towns of TN indicate significant penetration

Source Officer (2005)

Challenges at the Community Level

An individual cannot function in isolation. There has been countless research on the benefits of social support for development of various psychosocial factors. Thus, involving community which is often perceived to play a neutral role in management of disability can be effectively involved. The different roles in which community members can be involved are non-administrative staff of a special school, logistical arrangements of awareness campaigns, procuring of materials that help children with disability for facilitating different therapies as well as door to door campaigns. Most of the special schools inducted in the present study were located in suburban areas where not everyone is involved in everyday occupation. Their familiarity with the locality and basic literacy can be streamlined and capitalized to equip them with spreading awareness. This might in turn make them more empathetic toward the situation and increase their support in accordance. Some of the challenges at community level in delivering effective services to people with disability are as follows (Kumar et al., 2012):

• Understanding the Concept of Disability: Disability is a broad term that is applicable to only part of a population. The specificity associated with it makes it a topic of varied understanding. Lack of support from the community poses many challenges like isolation and stigmatization experienced by the children and their families. This isolation and stigmatization can lead to many future problems like low self-esteem, aggressive behavior in children, and manifestation of psychological disorders like conduct disorders.

• Prioritization of Available Resources: Disability management capitalizes on the resources that are available in the environment. Certain disabilities require infrastructural amendments (physical disabilities) more than the other resources, whereas certain others require availability of health resources (multiple disabilities). Thus, depending on the prevalence, the prioritization of the resources is a necessary step. Lack of the knowledge of available resources and dearth of reliable statistics poses challenges on this front.

• Adopting a Multisectoral Approach: Primary healthcare system must play a major role both as a provider and supporter and should engage with initiatives such as early identification of impairments and providing basic interventions, referrals to specialized services such as physical, occupational, and speech therapies, prosthetics and orthotics, and corrective surgeries. The educational sector should be more inclusive by adapting newer techniques with respect to content of the curriculum, methods of teaching and ensuring that classrooms, facilities, and educational materials more accessible. Collaboration with the employment and labor sectors is essential to ensure that both youth and adults with disabilities have access to training and work opportunities at community level.

• Monitoring and Evaluation of the System: The legislative framework and other services available for people with disability will be effective only when the community as a whole is aware and equipped. Therefore, there needs to be machinery in place that ensures information dissemination and consequent community mobilization that may help in the process of rehabilitation. Other positive outcomes of a monitoring system include opportunity for education, opportunity for work, transfer skills to community level, program activities, and involvement of disabled people.

The First Step

In the Adaama province of Ethiopia, a CBR worker noticed a bridge across a river was broken. This was making the mobility of persons with disabilities a very difficult job. The personnel initiated communication with the local school and government in order to do something about this issue. A local committee was thus formed. A community mobilization process was started by this committee, which encouraged economical and physical support of the community in building the new bridge. After the bridge was completed, the local government was motivated to take up more such activities that will improve the living conditions of persons with disabilities

Source: https://www.ncbi.nlm.nih.gov/books/NBK310937/

Stakeholders of disability management are parents, service providers, and teachers NGOs. More often than not, primary caregivers are not aware of the support systems they already engage with. This perception consequently led to their lack of trust in their surroundings for social support. Social support is one of the important factors that can mediate the frustration of parents and result in better care of their children. In case of service provider’s professional expertise of the service providers, the family characteristics and type of relationship between the service providers and the family are considered important. Teachers who believe that inclusive education is a part of school curriculum have higher chances of engaging in the same. Preparation is needed at different levels like preparing the children for getting included in regular classrooms like formulating bridge courses, preparing the mainstream schools for receiving children with disability like giving specialized training to teachers and preparing the parents for the same. Community-based rehabilitation programs can act as mediators between the NGOs and the general public. Challenges encountered at community level are understanding the concept of disability, prioritization of available resources, adopting a multisectoral approach, and monitoring and evaluation of the system.

Community-Based Rehabilitation

The resources available at the community level may be effectively used for rehabilitation persons with disability. This approach is effective at a primary health level. The community has a two-pronged role in managing disability. In one, it takes an active stage in imparting skills to the persons with disability, and the other is in the capacity of decision maker when it comes to planning, decision making, and evaluation of the program with multisectoral coordination. WHO has developed guidelines for effective community-based rehabilitation based on the objectives to be achieved according to the Convention on Rights of Persons with Disabilities. These guidelines were concentrated on the components of health, education, livelihood, social, and empowerment (Khasnabis et al., 2010).

Health: The key concepts here include health promotion, identifying barriers to health promotion, health promotion for family members, and developing health promotion action. The suggested activities include supporting health promotion campaigns, strengthening personal knowledge and skills, linking people to self-help groups, educating healthcare providers, and creating supportive environments.

Education: The key concepts under this component are early childhood care and education, primary education, secondary and higher education, non-formal education, and the process of lifelong learning. CBR programs pay special attention in promotion of inclusive education, integrated education, and special education. They also concentrate on identifying various barriers related to education of the disabled like poverty and gender.

Livelihood: The key concepts under this component are enhancing the different types of skills essential for work, providing opportunities for self-employment and wage employment, offering financial services, and ensuring social protection. Informal provision at the community level is through community-based organizations and, especially, self-help groups.

Social: Social roles are the positions people hold in society that are associated with certain responsibilities and activities. Different types of social roles include those related to relationships, work, daily routine, recreation and sport, and community). The social roles people hold are influenced by factors such as age, gender, culture, and disability. The elements in this component are providing personal assistance, ensuring enjoyments of relationships and family, participation in cultural activities as well as in recreational and leisure activities. Added to this is the element of justice that can be facilitated by the CBR workers.

Empowerment: The key elements of this component are facilitating advocacy and communication, community mobilization for change and action, promoting political participation of persons with disability, and coming together and forming disability organizations and participation in self-help groups which increases their visibility and helps them acquire mutual support.

Impact India Foundation and Community Health Initiative

Impact India Foundation is an organization situated in the Thane district of Maharashtra. It has brought into practice various initiatives that are based on the community’s contribution

Community Health Initiative (CHI) covers 1.5 million backward tribals in the state. CHI aims at the reduction of existing disabilities and incidence of future disabilities through prevention and cure using existing delivery systems and available infrastructure, in partnership with government, NGOS, and local community. To reduce disability, a model project in close partnership with the government needed to be introduced whose success could be replicated. A leading social work agency was commissioned to undertake a participatory baseline survey, understand the community’s needs and priorities, and enlist support. The government appointed a senior Deputy Director, Health Services, as a Liaison Officer for the Community Health Initiative, so that the government health infrastructure and personnel worked with IIF to identify the lacunae necessary to bridge the gap. IIF appealed to the Corporate Social Responsibility components of the private sector to provide funding support and donation of professional skills. IIF swung into action recruiting 40 staff, mainly locals, oriented to act as change agents to coordinate activities covering 1.5 million tribals and mobilizing the community to avail of health services. Meetings were held with self-help groups, Anganwadi (crèche) workers, Bhagats (Traditional Medicine practitioners), Suhinis (Traditional Birth Attendants), and partnerships were fostered with referral hospitals for free-of-cost treatment. While the government and private sector representatives will support with funding, IIF and other Non-Government Organisations in the area will make efforts to ensure the community is mobilized to create a demand on the public health system to ensure its effective functioning. Capacity building of the community assumes greater importance than ever

Source https://www.impactindia.org/

National Policies on Disability

Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (PWD Act)

Passed in 1995, the Persons with Disabilities Act covers the seven categories of disabilities. This act was often hailed as landmark legislation when it comes to the disability movement. The person with a disability should be certified as having no less than 40 percent of any disability as certified by a medical authority to avail the benefits provided under this legislation. The disabilities covered are as follows:

• (1) Blindness—It is the total absence of sight or visual acuity not exceeding 6/60 or 20/200 (Snellen chart) in the better eye with corrective lenses. A limited field of vision is also included in this definition.

• (2) Low Vision: It includes the visual capacity to execute a task with appropriate devices.

• (3) Leprosy cured: Leprosy is a contagious bacterial infection that affects eyes, skin, nose, and peripheral nerves. In the PWD act, people with three stages of the disease have been considered. These are a person who has been cured of leprosy but has lost sensation, a person who manifests deformity but has just adequate mobility and a person with severe physical deformity that affects engagement in employment.

• (4) Locomotor Disability: Restriction in the limb movement of a person has also been considered under this act. The etiology mainly consists of disability of bones, muscles, or joints. The provisions have been given keeping in view a substantial capability decided by the person’s involvement in routine jobs and normal functioning.

• (5) Hearing Impairment: A person who loses the ability to hear the sounds of 60 decibels or less in the better ear has hearing impairment and can avail the measures under this act.

• (6) Mental Retardation: This category specially considers those persons who have their range of intelligence below the normal. The normal range as defined by the IQ score is 90–110. Any person who has an IQ less than 90 is considered to be subnormally intelligent.

• (7) Mental Illness: This is an umbrella term that takes into account any mental health issue that is apart from mental retardation.

The major areas of focus, where protection of rights, equal opportunities, and full participation by appropriate governments and local authorities for the disabled have been provided, are as follows:

• Education: Education is taken to be a key in promoting the rights and opportunities for the persons with disabilities. Hence, this act provides for free and compulsory education till 18 years of age, promotion of inclusive as well as integrated education in regular schools and promotion of setting up of special schools and associated programs for those who cannot be included in the regular schools. The severity of disability being considered, vocational training has also been considered for these children so that they may attain gainful employment later. Provisions for both formal education and education through open universities have been implemented. Also, there is three percent reservation for people with disabilities in educational institutes. Modifications have been made in the existing curriculum and examination system so that their representation can be encouraged and enhanced.

• Public Accessibility: The act ensures that there will be no discrimination of persons with disabilities in transport facilities, traffic signals, or in built environments. State Governments within the limit of their economic capacities are to install auditory signals at red lights and have barrier-free environments to ensure access to all. Construction of ramps is one measure that may be included easily to accommodate people with locomotor disabilities. A barrier-free environment is the key to ensure the independence and streamlining of persons with disability in the society.

• Employment: Benefits like reservation, posts of convenience according to the disability, ensuring promotion even if the disability is acquired during the job, and appropriate pay scales and services that are at par with other employees have been provided here. This provision also ensures that a person with disability does not remain isolated and can maintain his or her sense of purpose in the society at large.

• Health: The act provides measures at both preventive and management level when it comes to health of persons with disabilities. There are benefits when it comes to screening in prenatal and postnatal stages to ensure early detection and thus more effective management. The institutes that play a significant role in identification and management of the conditions are given recognition under this act. Many research initiatives that may throw light on better rehabilitation of person with disability have been sponsored under this act as well as State Governments are to ensure implementation of “Government Schemes and Individual Benefits/Concessions for Persons with disabilities”.

The Lok Sabha passed “The Rights of Persons with Disabilities Bill—2016”. The Bill will replace the existing PwD Act, 1995, which was enacted 21 years back. The types of disabilities have been increased from existing 7 to 21, and the Central Government will have the power to add more types of disabilities. Speech and Language Disability and Specific Learning Disability have been added for the first time. Acid Attack Victims have been included. Dwarfism, muscular dystrophy has been indicated as a separate class of specified disability. The new categories of disabilities also included three blood disorders, namely thalassemia, hemophilia, and sickle cell disease. In addition, the government has been authorized to notify any other category of specified disability. The New Act will bring our law in line with the United National Convention on the Rights of Persons with Disabilities (UNCRPD), to which India is a signatory. This will fulfill the obligations on the part of India in terms of UNCRD. Further, the new law will not only enhance the rights and entitlements but also provide an effective mechanism for ensuring their empowerment and true inclusion into the society in a satisfactory manner.

National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999

The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act was passed by Parliament in 1999. This act covers the following disability areas and is defined by the National Trust as follows:

• "Autism means a condition of uneven skill development primarily affecting the communication and social abilities of a person, marked by repetitive and ritualistic behavior”.

• Cerebral Palsy means a group of non-progressive conditions of a person characterized by abnormal motor control posture resulting from brain insult or injuries occurring in the prenatal, perinatal, or infant period of development”.

• Multiple disabilities means a combination of two or more disabilities

• Severe disability means disability with eighty percent or more of one or more multiple disabilities.

Objectives of the Trust: The major aim of this act is to make people with disabilities self-sufficient and prevent their isolation from society by making the community more supportive physically, emotionally, and financially. The family support is ensured by making them empowered to care for these people as well as appointment of guardians in case there is no family or the guardians are deceased. Ancillary support is provided by recognizing registered organizations that provide need-based services to families of persons with disabilities.

• Powers and Duties of the Board: The primary aim of the board is to receive the financial funds allocated by Central Government for the disability sector, and then, they further distribute the resources to implement the approved programs. These programs are often channelized through registered organizations. All allocations work on the basis of priority. In the majority of situations, preference shall be given to women with disability or to persons with severe disability and to senior citizens with disability (i.e., persons above the age of 65 years). An approved program has the following characteristics:

  • Promotion of independent living in the community.

  • Facilitating care and support services like respite care, foster care, or day care services.

  • Ensuring a proper shelter of permanent or temporary nature.

  • Increasing social support by networking and other methods.

  • Constituting bodies that can ensure effective and appropriate guardianship.

• Procedure for Registration: An application needs to be filled and filed for a welfare trust to be established. The major aim of this trust should be promotion of welfare of persons with disability. Any association of persons with disability or any association of parents of persons with disability or any voluntary organization can choose to undergo this registration.

• Guardianship: A guardian is generally appointed for a person with disability with their due consent. The application for the choice of person is submitted to the local committee. If the person is not able to do so, then any registered organization may make an application to the local committee for appointment of guardian for a person with disability. This guardianship is to look after the needs of the person with disability and also to monitor the property that the person may own. The guardian thus appointed then has to deliver the details to the authority within a period of six months. These details include a list of immovable property and financial assets and liabilities incurred due to disability. Removal of guardians is also possible on the account of neglect or misappropriation of property.

• Accountability and Monitoring: Any registered organization can submit a written requisition to the board to access any book or document maintained by them.

Going Beyond Boundaries

Mobility India is a foundation that looks after the prosthesis and orthosis needs of people with physical disabilities. Through its various community-based rehabilitation approaches, they have succeeded in highlighting the role of community to take care of physical as well as emotional needs of the disabled. Swarnapriya was identified by Mobility India’s community facilitator for the community-based rehabilitation (CBR) programme. In order to improve Swarnapriya’s mobility, a wheelchair was provided to her. She also had a strong inclination for dancing. A dance studio “Swing n Sway Innovative” approached MI to take part in a cultural program to promote dance as a medium which has no boundaries. Through the platform, she was able to live her dream, and her performance was highly appreciated. Apart from providing such opportunities, mobility India has completed community rehabilitation initiatives in Rural Karnataka for and promoted programs like home-based education

Source mobility-india.org/

Rehabilitation Council of India Act, 1992

This act came into being to regulate the training of rehabilitation professionals and to maintain a Central Rehabilitation Register to certify rehabilitation professionals. Thus, by this act, the Rehabilitation Council of India has become the apex body to further professional development of those in the field of disability rehabilitation. According to this act, the term “rehabilitation professionals” refers to audiologists and speech therapists, clinical psychologists, hearing aid and earmold technicians, special educators, vocational counselors, and multipurpose rehabilitation therapists.

Objectives of the Council: Rehabilitation council mainly works for ensuring quality training for the service providers of the persons with disabilities. This is mainly done through implantation of training policies, ensuring credibility of service providers by standardizing training courses, eliciting their required qualifications as well as giving appropriate recognition to the institutes and universities which impart the necessary expertise to these potential service providers. Also, a Central Rehabilitation Register of Institutions possessing the recognized rehabilitation qualification is maintained with the council.

National Policy for Disability

National Policy for Disability (NPD) ensures equal opportunities and effective access to rehabilitation measures. It also endeavors to provide social rehabilitation. The National Policy recognizes that Persons with Disabilities are valuable human resources for the country and seeks to create an environment that provides them equal opportunities, protection of their rights and full participation in society. The focus of the policy shall be on the following:

Physical, educational, and economic rehabilitation measures: The measures to be adopted to provide effective services to the persons with disability need to cater them in a holistic manner. For this purpose, NPD proposes physical and educational resources that include counseling services provided by Accredited Social Health Activist (ASHA) addresses at the grassroot level, provision of assistive devices as prostheses and orthoses, tricycles, wheelchair, surgical footwear and devices for activities of daily living, and quality education through Sarva Shiksha Abhiyaan. This program effectively addresses the educational needs of students with disabilities. This includes education through an open learning system and open schools, alternative schooling, distance education, special schools, wherever necessary home-based education, itinerant teacher model, remedial teaching, part-time classes, community-based rehabilitation (CBR), and vocational education. Economic needs are addressed through the IEDC scheme which provides financial assistance for development and dissemination of resources like hostel allowance, production of instructional material training of general teachers, and equipment for resource rooms.

Human Resource development: Human resources will be trained to meet the requirement of education for children with disabilities under inclusive education, special education, home-based education, preschool education, etc. The training programs target teachers who are willing to be a part of inclusive education, enhancing the curriculum of special education training and training of caregivers for home-based education, and care services for disabled adults/ senior citizens, etc.

Education of persons with disabilities: Education of persons with disabilities has been provided with special attention under the NPD. This is so because education is considered to be instrumental in effectively empowering the person with disability, and it is a right-based issue for them. Our society and its tangible and intangible resources are structured in a stereotypic manner that often compromises on the right to education for this population. Hence, NPD provides for rehabilitation measures under the following categories:

• Curriculum revisions like devising a convenient medium of teaching, provision of learning tools, financial assistance to build up additional resources, and implementation of better interpersonal communication methods as well as a tailor-made evaluation system according to the abilities of the children are promoted under this policy.

• Legal provisions like reservation in government as well as private educational institutes, promotion of disability centers in universities, making the education campus more accessible and encouraging adoption of inclusive education.

• Training of educators includes a myriad of measures like organizing awareness camps for school teachers with the purpose of educating them regarding the problems and capabilities of children with disabilities, promotion of adult learning centers, and imparting of skills that will help in management of disabilities

Employment: A gainful employment is necessary for fulfilling the basic needs of an individual. Though there are reservations for the disabled in government sectors, their problems require more concrete steps. Under this legislation, the employment opportunities have been extended to the private sector as well as home-based income generation programs, imparting skills that ensure employment and accessible work environment have been ensured. Also, for those who are self-employed, assistance is provided through appropriate agencies like Marketing Boards, District Rural Development Agencies (DRDAs), private agencies, and Non-Governmental Organizations in marketing of goods and services produced by persons with disabilities.

Barrier-free environment: Public buildings (functional or recreational), transport amenities including roads, subways and pavements, railway platforms, bus-stops/terminals, ports, airports, modes of transports (bus, train, plane, and waterways), playgrounds, open space, etc., will be made accessible. Modification of Curriculum of Architects and Civil engineers will be undertaken to include issues relating to construction of barrier-free buildings. In service, training will be provided on these issues to the government architects and engineers. State Transport Undertakings will ensure disabled-friendly features in their vehicles. Railways will provide barrier coaches in a phased manner. They will also make the platforms buildings, toilets, and other facilities barrier-free coaches in a phased manner. They will also make the platforms buildings, toilets, and other facilities barrier-free. Communication needs of the persons with disabilities will be met by making information service and public documents accessible. Braille, tape-service, large print, and other appropriate technologies will be used to provide information for the persons with visual disability.

Social Protection: Social security measures ensure that a person is protected in the society and feels that he or she may live adequately. This policy covers issues like tax relief benefit, amount of pension and unemployment allowance, and support by Life Insurance cooperation without exception for persons with disabilities.

Sports recreation and cultural activities: Sports and cultural activities give an opportunity to the person with disability to explore and strengthen their abilities. Hence, under the policy, accessibility to the services and the travel opportunities have been emphasized upon. Identification of talent among persons with disabilities in different sports shall be made with the assistance of local NGOs. The representation of persons with disability will be enhanced by formation of sports organizations and cultural societies. Participation in the sports and recreational activities would be encouraged and thereafter reinforced with a national award for excellence in sports for persons with disabilities

United Nations Convention on the Rights of the Persons with Disabilities

Convention on the rights of the person with disabilities was adopted by the UN General Assembly in 2007. It has been signed by 158 countries and ratified by 138. It was brought into force as a result of the increasing prevalence of disability globally. It emphasizes on the implementation of the entire existing legislative framework for persons with disabilities. It has a total of 50 articles. Article 1 states the purpose of the convention, Article 2 gives out the key definitions of the constructs included in the convention, Articles 3–9 correspond to activities that require general application, Articles 10–30 elaborate on substantive rights, and Articles 41–50 describe the steps to be adopted for implementation and monitoring of these rights. The general principles on which the convention is based are as follows:

• Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.

• Non-discrimination which includes the concept of reasonable accommodation which is the “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms”.

• Full and effective participation and inclusion in society.

• Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity.

• Equality of opportunity.

• Accessibility.

• Equality between men and women.

• Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

In order to ensure the monitoring and implementation of the rights of the persons with disabilities, National Human Rights institutions play an important role. It provides for coordination between different parts of the government which requires multisectoral involvement. The purpose of such synergy is to reach a maximum number of national stakeholders that include civil society organizations, academic institutions, and the private sector.

In Sum

Persons with Disabilities Act, covers the seven categories of disabilities. This act was often hailed as a landmark legislation when it comes to the disability movement for education, public accessibility, health, and employment opportunities. The Lok Sabha passed “The Rights of Persons with Disabilities Bill—2016”. The types of disabilities have been increased from existing 7–21, and the Central Government will have the power to add more types of disabilities. The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act was passed by Parliament in 1999. This act mainly covers the measures of guardianship for persons with disabilities. Rehabilitation Council of India Act into being to regulate the training of rehabilitation professionals and to maintain a Central Rehabilitation Register to certify rehabilitation professionals. National Policy for Disability (NPD) ensures equal opportunities and effective access to rehabilitation measures. It also endeavors to provide social rehabilitation. Convention on the rights of the person with disabilities was adopted by the UN General Assembly in 2007. It has been signed by 158 countries and ratified by 138. It emphasizes on the implementation of all the existing legislative framework for persons with disabilities. The purpose of such synergy is to reach a maximum number of national stakeholders that include civil society organizations, academic institutions, and the private sector.

Conclusion and Recommendations

Care and support services to persons with disabilities involve resources and revisions at multiple levels. This needs help from many stakeholders, apart from the main caregivers like communities around, local bodies of the government, and other organizations that can provide infrastructural, economical, and legal aids to these people.

• 1. Accessibility to the services needs to be improved. We have come a long way in bringing out and understanding the problems of persons with disabilities and addressing them with appropriate solutions. But there is a strong requirement of connecting them to these solutions as well.

• 2. Institutions that offer multiple services in close proximity need to be increased in number.

• 3. A procedure that connects health professionals from different sectors needs to be encouraged so that problems and their solution can be brought out on a common platform.

• 4. Representation of persons with disabilities while formulating and implementing a respective legislation needs to be ensured.

• 5. A periodic evaluation of the already existing services has to be in place. This requires a dynamic system where the population for which these services are meant for are in touch with the authority. A smooth communication channel has to be procedurally implemented for the same.

• 6. Persons with disabilities are an important part of the population. They need to be empowered and streamlined into the society. Thus, the community that they live in should also be aware of their problems and participate actively in this process.