Community support for people with disabilities is essential for independent living. It includes personal assistance, communication support, supported living, and mobility support. Yet formal services remain extremely limited in many low- and middle-income countries. Families provide most support without adequate funding, training, or public assistance. This Center for Inclusive Policy (CIP) forum examines how governments and communities can develop more sustainable, coordinated, and rights-based support systems.
Why Do Support Needs Remain Unmet?
The UN Convention on the Rights of Persons with Disabilities (CRPD) requires access to adequate and appropriate support services for all persons with disabilities. Yet persons with disabilities experience significant unmet support needs throughout the world. Even high-income countries often provide inadequate formal support.
Common problems include insufficient funding, limited portability, and a lack of user involvement. Services often depend on the individual’s family situation, operate in segregated settings, or lack full coverage under social protection schemes.
However, the situation is particularly dire in low- and middle-income countries (LMICs). Support services for people with disabilities are almost non-existent. This increases their likelihood of living in poverty and experiencing violence and neglect. It also increases their risk of facing denial of legal capacity. As Balakrishna Venkatesh put it bluntly: “disability is often a non–issue in communities”.
In most LMICs, families must act as the main, if not only, source of support, with little or no government support. This has a significant negative impact on people with disabilities and their families. Individuals lose choice and control over the support they receive. Concerns over overprotection, privacy, and conflict of interests are common.
Informal unpaid support can also lead to long-term socioeconomic disadvantages. These include forgone education and employment opportunities, added household expenses, burnout, and family breakdown. There is a further gender implication. Girls and women in the family provide the support and bear the costs of forgone opportunities.
Participants in this Center for Inclusive Policy (CIP) forum shared many ideas on how to develop and deliver support services in LMICs. The responses have been very thorough and illustrative.
Why Can’t Support Be Separated from Families and Communities?
There seems to be a consensus that support services for persons with disabilities in LMICs must develop alongside families and communities. Social networks and solidarity play an important role in developing countries. Community mobilization provides an avenue to maximize resources.
Joseph Walugembe and Mohammed Abba Isa highlighted the potential to strengthen community structures to deliver support services for people with disabilities. This includes strengthening them through sustainable funding. As Daniel Mont added, governments must commit to funding and coordinating community-based responses. These include responses from organizations of persons with disabilities, community-based organizations and volunteers. They also include community-based inclusive development (CBID) and community-based rehabilitation (CBR) initiatives.
Families also need information, support, and respite to help their family members with disabilities. Community involvement can help develop culturally appropriate models of disability support. As Shivani Gupta pointed out, these models must be economically viable and acceptable.
What Policy Frameworks Are Needed?
Policy frameworks must ensure the provision of disability support. Catalina Devandas, the former UN Special Rapporteur on the rights of persons with disabilities, stressed this in her 2016 report on support services (1). Whatever the form of service provision, States have an international obligation to ensure access to quality support services for persons with disabilities.
To achieve this, States must recognize support services as integral to the right to live independently in the community. They should establish a comprehensive system to bring coherence and coordination across levels of government, service providers, and programmes.
As Poonam Natarajan mentioned, awareness raising and training are also key. They help reverse the invisibility of disability-related support requirements and address shortages of service providers and trained workers. These include sign language interpreters and personal assistants. Better data collection, including through disability assessments, is also necessary. It will help identify support requirements and improve coordination and service provision.
How Much Funding Is Actually Required?
LMICs require a significant increase in funding for support services. High-income countries spend an average of 1.4% of GDP on disability benefits and support. Most LMICs spend less than 0.1% of GDP (2). Current investment levels cannot sustain good quality community support for people with disabilities, even with community resources. Greater resources from governments and international cooperation are indispensable.
As Ronald Kasule noted, growing investment in social protection systems in LMICs offers an opportunity to mobilize resources for support services. Options include integrating the extra cost of support services into existing cash transfer programmes. Another option is ‘cash plus’ interventions, which combine cash transfers with one or more support services.
Why Must Persons with Disabilities Lead the Process?
As Daniel Mwesigwa, Sam Badege, and Balakrishna Venkatesh reminded us, policy efforts should also be participative, and consult and involve persons with disabilities and their organizations to ensure that the diversity of disability experiences is adequately mapped. The best experts on community support services for people with disabilities are people with disabilities themselves.
Support services for people with disabilities have been neglected for too long; it’s high time that this is placed as a priority on the agenda of governments and the international community. CIP will be actively working in the following years on how to improve access to support services for persons with disabilities in LMICs.
(1) United Nations, Human Rights Council, Report of the Special Rapporteur on the rights of persons with disabilities, A/HRC/34/58, 20 December 2016.
(2) Center for Inclusive Policy (CIP), Initial overview of specific social protection measures for persons with disabilities and their families in response to COVID 19 crisis, ILO and UNICEF, 2020.
