Disabled People’s Organisations increase access to services and improve well-being: evidence from a cluster randomized trial in North India

Abstract

Background: Disabled People's Organisations (DPOs) are the mainstay of disability responses worldwide. Yet there is no quantitative data assessing their effectiveness in low-and middle-income countries (LMICs). The aim of this study was to measure the effectiveness of DPOs as a low-cost intervention to improve well-being and access to services and facilities for people with disabilities. Methods: We undertook a cluster randomised intervention control trial across 39 distinct rural villages in Uttarakhand State, North India. A total of 527 participants were included from 39 villages: 302 people from 20 villages were assigned to the intervention arm and 225 from 19 villages were assigned to the control group. Over a 2-year period, people with disabilities were facilitated to form DPOs with regular home visits. Participants were also given financial support for public events and exposure visits to other DPOs. Seven domains were used to measure access and participation. Results: DPO formation had improved participation in community consultations (OR 2.57, 95% CI 1.4 to 4.72), social activities (OR 2.46, 95% CI 1.38 to 4.38), DPOs (OR 14.78, 95% CI 1.43 to 152.43), access to toilet facilities (OR 3.89, 95% CI 1.31 to 11.57), rehabilitation (OR 6.83, 95% CI 2.4 to 19.42) and Government social welfare services (OR 4.82, 95% CI 2.35 to 9.91) in intervention when compared to the control. People who were part of a DPO had an improvement in having their opinion heard (OR 1.94, 95% CI 1.16 to 3.24) and being able to make friends (OR 1.63, 95% CI 1 to 2.65) compared to those who were not part of a DPO. All other well-being variables had little evidence despite greater improvement in the DPO intervention group. Conclusions: This is the first randomised control trial to demonstrate that DPOs in LMICs are effective at improving participation, access and well-being. This study supports the ongoing role of DPOs in activities related to disability inclusion and disability services. This study also suggests that supporting the establishment, facilitation and strengthening of DPOs is a cost-effective intervention and role that non-governmental organisations (NGOs) can play. Trial registration: ISRCTN36867362, 9th Oct 2019 (retrospectively registered).

A qualitative cross-sectional study exploring the implementation of disability-inclusive WASH policy commitments in Svay Reing and Kampong Chhnang Provinces, Cambodia

“…Existing evidence demonstrates that, if supported to participate effectively, OPDs can play an essential and positive role in furthering the rights of persons with disabilities (Young et al, 2016;Grills et al, 2020). Young et al (2016) literature review about the roles and functions of OPDs in low-and middle-income countries found evidence that OPDs can have significant and positive outcomes for people with disabilities, especially in employment, participation in training interventions, accessing microfinance and bank loans and involvement in civil society.…”

“…Young et al (2016) literature review about the roles and functions of OPDs in low-and middle-income countries found evidence that OPDs can have significant and positive outcomes for people with disabilities, especially in employment, participation in training interventions, accessing microfinance and bank loans and involvement in civil society. A randomized control trial that aimed to measure the effectiveness of OPDs in improving people with disabilities' wellbeing in India found positive correlations between OPD involvement and increased participation, access to services (including sanitation), and wellbeing of the study population (Grills et al, 2020).…”

Methodological Approaches to Researching Organisations of Persons with Disabilities: a Case Study from Uttarakhand, North India

“…Of note, the randomised controlled trial provided the first RCT level evidence of the positive impact of OPDs, which was further supported by the qualitative studies. Within this Case Study, OPDs were generally found to have a positive effect on participation and well-being across a variety of domains (Butcher et al, 2021;Grills et al, 2020;Montgomery et al;Leung et al, 2019). OPDs were also found to improve the social connectedness of participants (Butcher et al, 2021;Grills et al, 2020;Montgomery et al;Leung et al, 2019), participants' selfconfidence (Butcher et al, 2021;Leung et al, 2019;, the ability for self-advocacy and persons with disability having their opinions heard (Grills et al, 2020;Leung et al, 2019), participation (Grills et al, 2020;Leung et al, 2019)and access to government services and assistive devices (Butcher et al, 2021;Leung et al, 2019;.…”

“…The outcome was not clear and differed between the studies. Within the RCT (Grills et al, 2020), employment was the one access indicator that did not show improvement; however the study by Butcher et al (2021) suggested access to methods of livelihood -such as raising chickens -did occur, and Leung et al (2019) found variables impact on income generation. It is possible that whilst OPDs might not have resulted in increased formal employment, they may have resulted in an increase in informal roles and self-employed activities such as subsistence farming.…”

Individual quality of life and the environment – towards a concept of livable areas for persons with disabilities in Poland

“…Hence, the institutional efficiency of local authorities, and their ability to listen to and cooperate with other crucial actors, are also essential elements in this context. Local policy should be shaped in constant dialogue with persons with disabilities and their representatives, care providers, service providers, and other institutions supporting persons with disabilities, especially non-governmental organizations [ 89 ]. The cooperation of these stakeholders can increase access to different assets and services for persons with disabilities, which can, in turn, increase their quality of life.…”