Engaging persons with disabilities and other vulnerable populations directly in decision-making, not only in health but in all sectors, is essential to achieve and sustain an inclusive society and fulfill the promise of health for all.
Recognizing this, the USAID-funded Leadership, Management, and Governance (LMG) Project organized a side session before the 2017 Prince Mahidol Award Conference focused on the role of governance in ensuring inclusive health that convened a diverse panel of civil society advocates from Southeast Asia to share their experiences with mobilizing stakeholders to amplify the voices of persons with disabilities, influence policies and programs, and accelerate progress toward health for all.
Civil Society Engagement for Inclusion
The LMG Project has worked with civil society advocates and government representatives to strengthen the enabling environment for disability rights and physical rehabilitation, to form coalitions that ensure appropriate wheelchair provision, and to scale up in-country leadership trainings led by women leaders with disabilities.
Dulam Jidjid, from Mongolia, who participated in the Mobility International USA Women’s Institute on Leadership and Disability (WILD) and WILD Training of Trainers programs; Ferdiliza Garcia, who participated in a World Health organization wheelchair managers and stakeholders meeting in the Philippines; and Nyunt Aung, an advocate for people with intellectual disabilities from Myanmar who participated in the LMG Project’s Senior Leadership Program; all discussed the successes and challenges they have faced in mobilizing stakeholders and some of the remaining barriers to inclusion.
Drawing on their experience in the disability movements in their countries, the panelists described five key actions they think are needed to advance inclusive health. Over the course of the conference, many of these same points were later reinforced as actions relevant to inclusion for all types of vulnerable populations:
- Effective engagement outside of the health sector to account for the social determinants of health and to address societal knowledge and attitudes
- Inclusion of persons with disabilities in all health programs rather than just offering specific disability services in a silo
- Ensure that inclusion of persons with disabilities is not only a development priority, but also has funding attached to it
- Establish more avenues and forums for civil society advocates and persons with disabilities to access decision-makers and the legislative process, and build their capacity to advocate and participate
- Build a critical mass of advocates to increase the visibility and influence of inclusive movements.
The panelists joined other attendees for a roundtable discussion of ways to overcome persisting barriers to inclusive health. A participant from the Philippines offered one suggestion: the bibingka approach, named after a Filipino cake that is heated from both the top and the bottom. In this approach, civil society advocates work at the national level through high-level champions and simultaneously work through community action at the grassroots level to influence multiple levels of the system.
Engagement, Accountability, and Universal Health Coverage for Inclusion
Similar messages were echoed throughout the entire conference by speakers and participants from all over the world. While various vulnerable groups were discussed and represented during the conference in addition to persons with disabilities—including lesbian, gay, bisexual, transgender, or intersex (LGBTI) people, refugees, urban slum dwellers, rural poor, migrants, refugees, tribal and indigenous populations, people living with HIV and AIDS, sex workers, and men who have sex with men —the theme underpinning the panels and discussions was universal health coverage (UHC), a target within Sustainable Development Goal 3, which many speakers held up as the key to social inclusion. Although every vulnerable population has unique attributes and struggles, some cross-cutting themes and recommendations emerged.
Multi-Sectoral Collaboration and Intersectionality
The need to focus on multi-sectoral collaboration in addition to health sector activities was a theme that reinforced the panelists’ discussion and was emphasized several times, not only linked to the social determinants of health, but also related to intersectionality, the idea that people are complex and to focus on one piece of their identity does a disservice.
Interestingly, despite agreement about the need to look at people holistically to achieve an inclusive society, the need for disaggregated data came up again and again. Evidence of what vulnerable populations experience, what they need, and what works is critical for governments to make informed policy decisions and to be accountable.
Some speakers suggested using data to target programs toward the most vulnerable or excluded groups to make up for massive deficits in services and care, on the premise that this would have the most impact in the least amount of time.
Civil society action and participation were also highlighted as crucial to combat exclusionary processes, promote political will, and hold policy makers accountable to providing care for their citizens. Thailand is one example of a country sustaining UHC despite relatively low income levels, thanks to genuine political commitment and leadership (others include Bhutan, Malawi, and Nepal).
Two final discussion points focused on addressing stigma and discrimination. Speakers mentioned the need to think about how health workforce selection, training, and motivation impacts inclusion for vulnerable populations. Some vulnerable groups who experience stigma, for example LGBTI people, will often go to private health providers because they are more respectful than the public health service providers, however, private health care is often less regulated, meaning they may receive poorer quality care and have to pay more for it.
Similarly, informational barriers prevent vulnerable populations from knowing and demanding their rights. This could be due to a lack of reasonable accommodations, such as the availability of sign language interpretation at health facilities, literacy, or general lack of awareness that services are available.
Systematic exclusion from education and isolation from society prevents many vulnerable populations from becoming advocates, policy makers, and program implementers themselves. However, to combat this, speakers talked about the need to embrace technology and innovation, create safe spaces for participation, and encourage South-to-South collaboration to share knowledge and best practices for inclusion in all areas.