In respect to the need of robust and credible data on healthcare needs of persons with disabilities as well as various environmental and personal factors impacting the disability condition for developing effective policies and programs, “Study on Access to Mainstream Health Services for the Persons with Disability in Bangladesh” has been conducted.
Among the 207 persons with disabilities surveyed, 71% of were below 30 years of age, 57.5% of them were male and 42.5% were female. Overall about 27% of the persons with disabilities were married, while about 35% of male persons with disabilities were married only 16% of female persons with disabilities were married, which could be a reflection of gender discrimination that female persons with disabilities are experiencing at community level to get married.
Eighty seven or 42% of persons with disabilities had multiple i.e. at least one type of disability and reported a total of 318 disabilities. In terms of relative ranking, highest percentage of disability was for speech disability (17.9%) followed by physical disability (16.4%), hearing disability (12.6%), intellectual disability (11.3%), visual disability (11%), cerebral palsy (8.2%), mental illness leading to disability (6.9%), Down Syndrome (6.6%), autism (4.7%) and deaf-blindness (2.8%). Higher percentage of female persons with disabilities were suffering from mental illness, intellectual disabilities and hearing disabilities.
As reported by the families of persons with disabilities in this study, congenital birth defects were by far the most reported causes of disability (41.9%). The second-ranked reported cause was illnesses those resulted in disabilities (23.3%) followed by injury/accident/burn (11.6%). Together with these three causes; congenital factors, illness and injuries accounted for 76.8% of the reported causes of disabilities in this survey.
Overall 87% of surveyed persons with disabilities sought general healthcare while only 46.4% sought healthcare for their disabilities. The persons with disabilities sought healthcare for their disabilities mostly at their own district/divisional-level facility followed by from the upazila health complexes. Community clinics were the preferred destinations for seeking general healthcare (18.1%) but not for disability care (1.2%). Taking all sources into account, 37% of persons with disabilities who sought disability care expressed their client satisfactions and another 28.4% were moderately satisfied. On average persons with disabilities spent BDT 26932.5 for seeking healthcare services.
On the other hand, none of the female persons with disabilities reported to access any employment support, where 13.1% of male persons with disabilities did so, which could be a reflection of gender discrimination in accessing employments.
The access barrier is compounded by poor information and awareness about whatever facilities do exist. ‘Don’t know where to go’ was a constant refrain heard in the many FGDs held with persons with disabilities and their families.
FGDs findings revealed that parents or caregivers of persons with disabilities were not properly counseled on the prognosis, treatment length, cost, referral etc. especially when the problem was first diagnosed. In-depth interviews and multi-stakeholder consultations flagged the issue of coordination gap among the service providers and opined that given the diversity of disability conditions, ensuring such services within existing mainstream healthcare system was very difficult. A key observation emerged from all of the qualitative researches was that wrong diagnoses were taking place during the early stage of diseases which frequently resulted in disabilities.
During direct observation visits of service facilities, the presence/absence of a total of 26 disability-relevant services was enquired into and it was found that disability services were absent at the lowest tier (union level), and availability of uneven and inadequate services at the secondary (upazila) and tertiary (district/national) level.
The exhaustive enquiry into persons with disabilities experiences through this study has underscored the importance of a balanced focus in which attention has simultaneously to be directed both at the socio-environmental constraints and the core healthcare needs of the persons with disabilities. Small interventions such as i) ensuring appropriately-designed ramps and signs in all public infrastructures and particularly in health facilities ii) ensuring inclusion of persons with disabilities-relevant medicines in the list of free medicines at the grass-root community clinics and iii) development of service protocols for persons with disabilities for application at primary, secondary and tertiary tiers are as important as the big legislative and policy steps.