In many contexts (from low to high income), policy development often excludes its intended beneficiaries (e.g., wheelchair users, rehabilitation professionals) and is conducted with reference points related to context with greater resources and by people unfamiliar with the country [27]. Therefore, there is a strong call to engage local stakeholders, with emphasis on civil society organizations, to inform, create, implement, monitor and evaluate policies to promote the wheelchair sector. In addition, in countries that still face significant attitudinal barriers towards people with disabilities, there needs to be a strong strategy to improve organizational (including government officials and service providers) and societal and cultural attitudes necessary to change the systems and policy level [27].
The role of Non-governmental Organizations & Disabled Peoples’ Organizations in Policy Development and Implementation
DPOs and NGOs are formally structured organizations that work at regional, national and international levels to serve the population of people with disabilities by advocating for equal rights and equal access to health care needs. For instance, several DPOs worked in partnership with the UN towards the development of the UNCRPD [57]. Including DPOs in forming policy and developing service delivery models is an excellent resource, as user and family experience provide perspective. These partnerships with DPOs and NGOs are critical as they have experience and expertise working with and for persons with disabilities. DPOs and NGOs can assist in countries that are developing their service provision, as well as educational programs for wheelchair services by working in collaboration to establish services, networks and resources. The goal is to reach sustainability for the service provision, and not compete with or duplicate services but complement and support other existing services. For example, good practices at the local level, many times run by DPOs and/or NGOs could be scaled up or replicated. In some contexts, DPOs and NGOs will be in the driver’s seat, advocating for government to act and establish policies. The tools included in this PAK will help DPOs and NGOs advocate for appropriate policies and practice in regards to wheelchair service provision. In most less-resourced settings, even where policies exist, wheelchair service provision is largely facilitated by NGOs and not provided by the government.
Last, Article 33 on the UNCRPD and the Committee’s guidelines on State Reporting support participation of non-governmental bodies, especially DPOs in the monitoring and reporting process of the implementation of the UNCRPD. DPOs are encouraged to submit shadow reports that are reviewed by the Committee in addition to the reports submitted by State Parties [59]. It is important to identify whether a shadow report of the country being assessed has been developed, who leads the report, and understand where the leaders stand with respect to the implementation of Articles 20 and 26. For your reference here are examples of shadow reports from Mexico, Australia, and Colombia. You can find your country’s State and alternative reports on the Office of Human Rights High Commissioner website.
The role of Professional Organizations in Policy Development and Implementation
According to the WHO Guidelines, professional groups have several roles [5]:
- “Guiding and supporting the activities of those responsible for wheelchair services;
- Advancing the practice and standards of wheelchair service delivery;
- Facilitating the placement of wheelchair professionals;
- Facilitating the exchange of information; and
- Promoting the education and training of wheelchair professionals.”
Professional organizations, if existent, are commonly called by the Ministry of Health to participate in informed decision-making. It is important to identify those organizations that have high-level advocacy activities to understand where they stand related to wheelchair provision and opportunities for a coordinated advocacy effort in the sector. Examples of professional organizations focused mainly on wheelchair professionals include: The Argentinian Assistive Technology Association, Philippines Society of Wheelchair Professionals, and the Posture and Mobility Group in the United Kingdom.