For most persons with disabilities, support services are necessary preconditions to live and fully participate in the community, with choices equal to others. In this report, the Special Rapporteur elaborates on the need for their inclusion in national policies and legislation, and provides guidelines for their implementation.
Giving and receiving support is part of the human experience for all of us. All communities have ways of providing help or assistance in both formal and informal ways, which are naturally integrated into society. Some persons with disabilities require specific forms of support for daily activities and social participation. These range from activities like bathing, dressing and eating, to living independently, getting around and working. Governments have a key role to play in providing support to persons with disabilities. In this report, we set out principles and guidance for how this can be done in a rights-based way.
Support for persons with disabilities is particularly relevant in:
- Decision-making and exercising legal capacity.
- Communication through alternative modes, means and formats.
- Personal mobility and transportation.
- Performing daily activities and personal assistance.
- Living independently in the community.
- Access to general services, such as education, justice, and health, among others.
Why is support important?
Persons with disabilities make up 15% of the world population. Currently, most of them rely on informal means of support, from families and personal networks, which are insufficient to meet their needs.
The lack of options and appropriate support services puts persons with disabilities at risk. It has negative consequences on their ability to choose for themselves and have control of the way they live. Lack of formal support systems puts more pressure on persons with disabilities, their family and communities. It also increases the risk of institutionalization and segregation. A better understanding and more commitment by policymakers and all other stakeholders are required to meet the support needs of persons with disabilities.
Context of Support
Support should move away from traditional ideas of care and caregiving that see persons with disabilities as passive recipients of assistance. Often this style of providing care has led to segregation and disempowerment of persons with disabilities. Support should be based on persons with disabilities having choice and control over their own lives. Independent living is not based on self-sufficiency, but rather on having this choice and control over one’s own life.
Accessibility and support are related, but the responsibilities lie with different actors. Accessibility is related to the physical environment, transportation, information and communications. Some of these areas overlap with those where support may be needed. The difference is that support is linked to assisting individuals, whereas accessibility is about environmental change. Like accessibility, support is required under the United Nation’s Convention for the Rights of Persons with Disabilities.
Provision of support should consider the diversity of persons with disabilities. Services should respond to the needs, and respect the rights of, women and girls with disabilities. Children with disabilities and their families are in particular need of support services in education and health. Older persons with disabilities may need support through personal assistance, assisted living arrangements and palliative care. Policies and programmes for support should take into account multiple discrimination as well as the specific needs of different disabilities.
Elements of good support
- Availability. Appropriate support services should be available to all persons with disabilities in sufficient quantity, through whichever means they are provided.
- Accessibility. There should be no barriers or discrimination in the access to services for all persons with disabilities. There are diferent forms of accessibility that need to be considered, including affordability and geographic reach.
- Acceptability. All programmes should be provided on a voluntary basis and respect the rights and dignity of persons with disabilities.
- Choice and control. Persons with disabilities should have the opportunity to plan and direct their own support. Existing services often do not comply with this standard.
Recommendations for Governments
- Take a national approach to providing support, ensuring resources and mainstreaming in all policies and programmes.
- Provide quality community-based support services and phase out institutionalization.
- Ensure participation, choice and control of persons with disabilities.
- Ensure non-discrimination, monitoring and safeguards.
- Develop international cooperation on support services.