This knowledge is important to help ensure that persons with spinal cord injury (SCI) who are engaged in rehabilitation receive the benefits he or she is entitled to and that are essential for successful rehabilitation and community reintegration. It is also valuable for empowering these persons to take the responsibility for applying these rights in life situations, such as in accessing healthcare services. 9
"...being able to access healthcare services is not just about the availability of services, it is also about the utilisation of the available services."
Empowerment Through Knowledge and Advocacy
The right to access healthcare is one of the many fundamental rights a person with disability has according to the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD). 3 Accessibility is a central theme throughout the CRPD along with its emphasis on autonomy and self-determination. With regard to healthcare, however, being able to access healthcare services is not just about the availability of services, it is also about the utilisation of the available services. 22 One way to promote the utilisation of available services is, as the International Perspectives on Spinal Cord Injury (IPSCI) report recommends, empowering persons with SCI (and their family members) by providing them with information and education so that they are able to look after their own healthcare to the greatest extent possible. 9 This could include information and education about relevant social security and anti-discrimination legislation, regulations and corresponding administrative procedures.
In addition to empowering persons with SCI with knowledge and information, there is also a need to provide advocacy and assistance with regard to the legal system and insurance benefits. In a study of 81 newly injured persons with traumatic SCI receiving independent living services in the community, 37% of the participants indicated that assistance with legal rights was an unmet need. Furthermore, 29% indicated that the need for assistance in obtaining governmental benefits was not met. 23
In Ben’s case, the social worker and occupational therapist (OT) were pro-active in involving Ben in the process of clarifying his eligibility and applying for cost coverage for health (e.g. bladder management training) and health-related products, technology, and services (e.g. home modifications). Furthermore, Ben gained knowledge about his rights as a person with disability and received helpful tips for dealing with the complexities of the insurance and social security systems from his peers at the rehabilitation centre.
The Value of Peer Support
As seen in Ben’s case, peers (other persons with SCI) can be a valuable source of knowledge and support. The advice and support, such as pointing out specific services, agencies and sources of funding, received from someone who has had similar experiences and faced similar challenges can have a powerful empowering effect. The personal experience of living with SCI lends credibility to the advice given by a peer. It has also shown to have the potential of improving rehabilitation outcomes. For these reasons, peer mentoring is increasingly becoming an integral part of rehabilitation programmes. 9 17 24
"The advice and support...received from someone who has had similar experiences and faced similar challenges can have a powerful empowering effect."
Peer support can be provided on an informal basis or within a formal peer mentoring programme. Based on their 2-year study on the reintegration and quality of life of adults with SCI living in the community, Boschen and colleagues advocate for offering both informal and formal opportunities for exchanging peer advice and providing peer support, since some may be more willing to utilise informal peer support than formalized peer mentoring programmes. 17
As illustrated by this case study of Ben, gaining insight into legal and social security challenges that a person with SCI can face and acquiring knowledge about disability rights and strategies for navigating the complex legal and social security systems can provide the necessary tools to be successful in living independently in the community.