So who ‘counts’ as disabled? You have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
People with disabilities face stigma because of their impairments. They are often marginalised, more so if they have psycho-social disabilities. This makes it difficult for them to access basic services such as healthcare.
The inequalities experienced by disabled people are well-documented. Disabled people are more likely to live in poverty, have less access to education and employment, and experience poorer ratings of personal well-being compared with non-disabled people.
Health and care services need to understand the broad diversity of disabled people’s identities and experiences, and adopt a social model approach to disability, understanding that people are disabled by barriers in society, rather than by impairments or health conditions.
Care as a subject is multi-dimensional. Childcare, for instance, includes health, nutrition, education, development, and protection. As a result, there are a variety of stakeholders involved in the field.
Community based workers have specialised skills and experience working at a household and community level. They are able to identify, screen and support vulnerable individuals and families. They include community health workers, home based carers, community rehabilitation workers and community development workers.
A study in three rural communities in Botswana, South Africa and Malawi found that community rehabilitation workers, community development workers and community health workers bridged the gaps between people with disabilities, their families and services at district level. They worked in communities and were able to help authorities identify families with a person with a disability.
Critical catalysts
Recipients should be able to receive care inside their homes within the family structures which already exist, whether it is temporary care or more complex care. They should have access to an entire ecosystem of care that has a mix of formalised and informalised structures, practices and resources. Recipients should be able to have their basic needs such as healthcare and their emotional needs such as connection met.
Community based workers act as critical catalysts in improving the access to health, social and economic development as well as education resources. In turn, this facilitates integration into existing services.
Their skills, abilities and competencies are integral to the human resources for health workforce.
Community based workers are able to build trusting relationships with people with disabilities and their families. This support helps reduce their anxiety and allows them to participate in community campaigns and events. In doing so, their dignity and sense of belonging in their families and communities is restored.
An example:
SEESHA identifies children with various types of intellectual disabilities in the communities we work and enrols them in the community-based Special Education centres.
These centres, in addition to training the differently-abled, are also beacons for sensitising the communities towards persons with disabilities. They offer special education specific to the needs of each child, in consultation with their families.
Professionally trained occupational therapists, physiotherapists, speech therapists, and special educators at the SEESHA Rehabilitation & Special Education Centre in Vanagaram, Tamil Nadu, provide treatment and therapy, appropriate to the individual conditions of each child free of cost. A counselling service for the parents of children with special needs is also being offered for free at the centre.
10.6% of school-aged children in Sri Lanka reportedly have disabilities, 10.2% do not attend school because of it. This is a glaring gap which must be addressed. This writer argues, care services must go to the beneficiary. Every Province has a significant development officer cadre. A percentage should be trained to reach beneficiaries at homes. It requires psychological skills, healthcare knowledge, specialised teaching aids and education for carers.
Home Supports are services, supports and supervision provided for individuals in and around their residences up to 24 hours a day, seven days a week (24/7). Home supports help individuals acquire and retain life skills, to maintain health and safety, and develop as much independence as possible in their home.
We have not deliberately built a community care network of note for the differently abled children yet. It requires coordination between health services, education and social services.
Ages zero to four are the most important years of human life intellectually and emotionally. High quality infant and toddler care is badly needed in our community.Early attachment, healthy development and nutritional needs promote physical, cognitive, social, and emotional development to prepare children for continued growth, development, and later success in primary school.
Much of day-to-day life is shaped by our communities and how we interact with them, and being a valued and active member of a community is crucial for empowered living. Community Supports help individuals with developmental disabilities access their communities through multiple avenues, including hobbies, interests, employment, social activities, and more. Like Home Support, Community Support through Community Care Network can take different forms, depending on individual needs and goals.
The decision to seek support for yourself or loved one with a developmental disability is a big one. Whether you wish to live more independently or need help supporting a loved one, developmental disability services can have a positive impact on an individual’s and family’s life.
Jeevan Thiagarajah
