For many people with disabilities, access to support services -such as personal assistance, communication support, supported living arrangements and support for mobility- is a precondition to participate in society and live with dignity. While the UN Convention on the Rights of Persons with Disabilities (CRPD) requires all persons with disabilities to have access to adequate and appropriate support services, throughout the world persons with disabilities experience significant unmet support needs. Even in high-income countries, where formal support services are available, such support is often inadequate. Support services commonly: are underfunded, have limited portability, lack user involvement, are dependant on the individual’s family situation, provided in segregated settings, or not fully covered by social protection schemes.
However, the situation is particularly dire in low- and middle-income countries (LMICs). There, support services for people with disabilities are almost non-existent, which increases their likelihood of living in poverty, experiencing violence and neglect, and being denied legal capacity. As Balakrishna Venkatesh put it bluntly: “disability is often a non–issue in communities”. In most LMIC, families are expected to be the main, if not only, source of support, with no or little support from governments. This has a significant negative impact on people with disabilities and their families. On the one hand, individuals lose choice and control over the support they receive, and concerns over overprotection, privacy, and conflict of interests are common. On the other hand, informal unpaid support can lead to long-term social economic disadvantages, including forgone education and employment opportunities, added household expenses, burnout, and family breakdown. There is a further gender implication to this, as girls and women of the family are the ones providing the support and bearing the costs of forgone opportunities.
Participants in this forum shared many ideas on how to develop and deliver support services in LMICs. The responses have been very thorough and illustrative.
First, there seems to be a consensus that support services for persons with disabilities in LMICs cannot be developed apart from families and communities. Social networks and solidarity play an important role in developing countries and community mobilization provides an avenue to maximize resources. Joseph Walugembe and Mohammed Abba Isa highlighted how community structures could potentially be leveraged and strengthened, including through sustainable funding, to deliver support services for people with disabilities. As Daniel Mont added, this requires a buy-in from governments to fund and coordinate community-based responses, including from organizations of persons with disabilities, community-based organizations and volunteers, and 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 to develop culturally appropriate models of disability support that are both economically viable and acceptable, something that, as Shivani Gupta pointed out, is fundamental.
Second, there is a need for policy frameworks that ensure to provision of disability support. As the former UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas, stressed in her 2016 report on support services, whatever the form of provision of services, States have an international obligation to ensure that persons with disabilities have access to and receive quality support services.[1] To achieve this, support services must be recognized as an integral part of the right of persons with disabilities to live independently in the community, and a comprehensive system should be put in place to bring coherence and coordination across levels of government, service providers, and programmes. Awareness raising and training –as Poonam Natarajan mentioned– are also key to reversing the invisibility of disability-related support requirements and to addressing shortages in service providers and trained workforce (i.e., sign language interpreters, personal assistants, etc.). Better data collection, including through disability assessments, will be further needed to identify support requirements and improve coordination and service provision.
Third, a significant increase of funding allocated to support services is required in LMICs. While high income countries expend on average 1.4% of its GDP in disability benefits and support, most LMICs spend less than 0.1% of its GDP.[2] Providing good quality support services to people with disabilities, even mobilising community resources, is unsustainable at current levels of investments. A greater injection of resources from governments and international cooperation is indispensable. As Ronald Kasule noted, the growing investment in social protection systems in LMICs represents an opportunity for mobilizing and leveraging resources for support services. This can be done by integrating the extra cost of support services in existing cash transfer programmes, or through ‘cash plus’ interventions that combine cash transfers with one or more support services.
Finally, 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 LMIC.
[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] Centre 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.