Inclusion counts also for disabled people
Community mobilization towards equity in health
Von Jay Kumar
Healthcare is a human right yet people with disabilities face a multitude of barriers to accessing health services. Equity in health can only be achieved through active participation of people with disabilities and their communities in planning, implementing and monitoring the healthcare service. Community mobilization is a key strategy for increasing demand for and use of health services. It will help communities to identify and address the specific barriers to service access. In addition, it will help to advocate for policy changes to make health services inclusive and to respond better to their needs.
Disability inclusive eye care service - Mr. Suresh Dhondge © CBM
The World Health Organization defines health as “a complete state of physical, mental and social well-being, and not merely the absence of disease or infirmity.” It has been said that, while “health is not everything, everything is nothing without health.” This is because good health enables a person to have a good life and a full life expectancy. However, poor health or lack of access to needed healthcare also makes it more difficult for other rights to be realized. If an individual does not have access to needed medical or rehabilitation services, they may be unable to attend a school or access livelihood opportunities or participate in society. While rural residents generally experience barriers to access primary healthcare, these problems are further exacerbated for people with disabilities.
Pecha Kucha by Jay Kumar at the MMS Symposium 2019
Persons with disabilities are too often not treated adequately at the health centre
Persons with disabilities have the same health needs as every other member of the population, from promotion, prevention, and treatment, to rehabilitation and palliative care. They may also have additional or more complex health needs, because of impairment and the consequences of impairment. Though equitable access to healthcare service is a major principle of the national health system, people with disabilities are experiencing greater barriers in accessing healthcare services. These include physical barriers that prevent access for persons with disabilities to health clinics and hospitals. For example, Hospitals, in general, would have only a ramp or just a slope at the entrance! They would not have any other necessary facilities like accessible washrooms, examining tables, suitable weighing machines, etc. In most cases, people with disabilities may not be examined, or not to the same standards as others because of the absence of accessible furniture or equipment. Information and communication barriers are less recognized and understood by many people. People with hearing impairment face huge difficulty communicating with doctors because there are no sign language interpreters and doctors do not give time to understand a deaf person. People with visual impairment may not be able to read instructions regarding medicine given by health professionals. Attitudes of health professionals and negative beliefs about the worth of people with disabilities is also an important barrier to people with disabilities. Stigma against people with disabilities discourages people from attending healthcare services. Some service providers believe that women with disabilities are neither sexually active nor capable of bearing children, which results in low access to Reproductive Health (RH) services and other related programmes. These problems are further exacerbated for those with disabilities from certain ethnic minority groups.
Physical barriers faced by persons with disabilities in accessing primary healthcare services - Mr. Rahul Gupta © CBM
Disability, poverty and poor health are inter-related
Poor access to healthcare service and rehabilitation may impair the enjoyment of other rights because disability, poverty and poor health are inter-related. Poverty leads to poor nutrition, lack of access to health, unhealthy and unsafe living and working conditions, which can lead to impairments and disease. After the onset of a disability, barriers to health facilities, education, employment, and other aspects can trap people in a cycle of poverty. Therefore, people with disabilities need equal access to mainstream healthcare services and which is why Article 25 and 26 of the UN Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabilities to attain the highest standard of healthcare and rehabilitation, without discrimination.
The health status of persons with disabilities is often poorer than that of the general population. People with disabilities are particularly vulnerable to deficiencies in healthcare services and experience greater vulnerability to secondary conditions, co-morbid conditions, age-related conditions, engaging in health risk behaviors and higher rates of premature death. For example, people with spinal cord injury are at increased risk of pressure sores and urinary tract infections. People with Down’s syndrome are more likely to experience congenital heart disease, impaired hearing and early onset dementia. Due to the higher vulnerability to health concerns, on average persons with disabilities are likely to require and use health services more than persons without disabilities. The health outcome of people with disabilities can be improved by making the healthcare service available as close as possible for people with disabilities to have easy access and all the health facilities are made accessible for all. Which also implies the right to seek, receive and impart health-related information in an accessible format. Health professionals should accept people with disabilities and treat them with respect and dignity. They should support them to make decisions for themselves, on the basis of informed consent and also should make the services affordable and provide equally to all individuals irrespective of their gender, age, and ethnicity and with the same quality as to others.
Access to primary healthcare service is a fundamental right for all - Mr. Rahul Gupta © CBM
The aim is to make health services inclusive
Access to healthcare for persons with disabilities extends well beyond the accessibility factors described above. Differences in access to health and social services may arise due to availability insofar as services may be scarce or simply not be provided to certain groups, quality may vary between groups, and not all groups may be aware of certain services owing to information deficiencies. Access to healthcare for persons with disabilities is a complex issue hence for promoting equality and equity within this context it requires a range of responses. It is important both to enhance the capacity of people with disabilities and their families (and those who support them) to access healthcare services and to ensure that the system and procedures accommodate people with disabilities and are able to respond in an appropriate and timely manner to their needs. For example, conducting annual general health checks to proactively identify health needs that may have been unmet and have a strong referral system for accessing the appropriate rehabilitation needs.
The emphasis is now placed on making health services inclusive so that all individuals can access healthcare irrespective of impairment, gender, age, colour, race, religion and socioeconomic status. To ensure this, health professionals should consult different stakeholders that include persons with disabilities across the full range of disabilities. The healthcare service providers need to have positive attitudes towards people with disabilities and have appropriate skills, e.g. communication skills to accommodate the needs of people with different impairments.
The Community based Inclusive Development approach (CBID) can play a vital role in promoting inclusive healthcare services. CBID is a person centred, bottom-up approach, using participatory processes where people with disabilities and their communities empower themselves, so they can exercise their rights. Community mobilisation is the important backbone of this approach where people with disabilities and their communities are mobilized to identify their health needs and address the specific barriers to service access by taking active participation in planning, implementing and monitoring of the healthcare services. Community mobilization also helps to raise awareness both of health issues of persons with disabilities at the community level and of social and cultural issues that may promote or inhibit the use of information and services, as well as improve the understanding of the methods or services being offered. It also helps in linking health institutions and structures to communities, fostering greater access to and equity in health.
CBM has understood the importance of the CBID approach in promoting inclusive health care services and has successfully implemented several programmes across the country. Aligning with the approach, CBMs inclusive health care programmes have given prime importance to community mobilization, and this has helped in analysing and addressing the barriers in accessing health care services. Community mobilization helped in motivating and encouraging persons with disabilities to become a member of village-level health committees and actively participate in planning, implementing and monitoring of the healthcare services.
Respecting the health rights of persons with disabilities - Mr. Suresh Dhondge © CBM
Increased community awareness regarding disability, the importance of health, needs of persons with disabilities and their rights has not only reduced the stigma against the people with disabilities but also brought change in health-seeking behaviour. Knowing their right, people with disabilities along the community are demanding for inclusive primary health care.
Training for healthcare professionals on the rights of persons with disabilities is essential. In particular, the frontline health workers (village level health workers) reduced stigma. Improving their communication skills to interact with people with different disabilities has strengthened their relationship with people with disabilities and has ultimately improved the quality of health services delivered to them.
This approach not only ensured people with disabilities to access healthcare service but also the healthcare services to become inclusive and reach the whole population, people with disabilities and their communities taking proactive measures so that nobody is actively, or passively, discriminated against and thrive for a healthy environment, with quality healthcare.
Equity in health can only be achieved through the active participation of people with disabilities and their communities in the local health program that includes them from the time of designing the program. Community mobilization is important because it will enable people, to exercise collectively their responsibility to their own health, demand health as their rights and support in strengthening inclusive quality health service.
Achieving the right to access to health underpins other social and economic rights. So, by making healthcare services inclusive, respectful and barrier-free, this will help people with disabilities to realize their other rights, to education, employment, and so will improve well-being, social inclusion and reduce poverty.
Jay Kumar has 15 years’ work experience in the development sector and has held many positions during his career, from community facilitator to team leader, coordinator and programme manager. He is currently Programme Officer for Advocacy and Livelihood at CBM India.