/ Summary of issues raised during the informal consultation on the development of the“WHO action plan 2014-2021: Better health for persons with disabilities”
Quito, Ecuador, 5-6 November 2013
Disclaimer: This informal note is not a complete record of discussions and does not represent an official position of the World Health Organization. Consultations provide an opportunity to explore the views of interested parties on the subject matter. References to WHO, Member States and international partners are suggestions only and do not constitute or imply any endorsement whatsoever of this informal note. This informal note will serve as an input to the work of the WHO Secretariat to complete the work on the development of a draft disability action plan for consideration by Member States at the 134th session of the WHO Executive Board.
Organizational arrangements and participation
The Pan American Health Organization (PAHO) was pleased to welcome high-level officials of Member State delegates, special guests and experts from the PAHO/WHOCollaboratingCenters ondisability and rehabilitation,academic and professional institutions, organizations of persons with disabilities and NGOs at the Regional Consultation of the Americas in Quito on 5th and 6th November to discuss the draft “WHO action plan 2014-2021: Better Health for Persons with Disabilities".
The consultations started with opening remarks by the Technical Secretary of Disabilities of Ecuador, Alex Camacho, the Representative of PAHO/WHO in Ecuador, Manuel Peña, and the Minister of Public Health of Ecuador, Carina Vance. Minister Vance subsequently established the consultation process by adopting the agenda and choosing the moderators, followed by a presentation on the World Health Assembly resolution on disability (WHA 66.9) by Alex Camacho. Armando Vasquez, PAHO/WHO Regional Disability Advisor, then presented the background, objectives and methodology of the meeting, and Alana Officer, WHO Coordinator for the Disability and Rehabilitation Team (DAR) delivered a presentation on the draft WHO disability action plan.
After this opening session, official delegates and special guests where divided into five working groups to discuss the vision, goal, objectives, principles, approaches and proposed actions the subsequent implementation of the action plan. The closing ceremony was led by the Ecuadorian MH National Director of International Relations and Cooperation, Carlos Emanuele, the PAHO/WHO Director of Noncommunicable Diseases and Mental Health, Carlos Santos-Burgoa, Alex Camacho and Alana Officer. During the closure, the regional consultation was informed of Ecuador's proposal to appoint the former Vice President Lenin Moreno as envoy or special representative on disability to the UN with the desire to transmit this aspiration to the UN Secretary General.
Summary of key issues
General comments
Integral health: There was general agreement on the need to include the concept of integral and inclusive health care. It was suggested that the notion of integral health care should be taken into account whenever health is addressed in the action plan, especially in the sections discussing vision, goal and approaches.
Intersectoral and multidisciplinary approach: Delegates elaborated on the difference between the terms multisectoral and intersectoral collaboration, suggesting that an intersectoral approach was more appropriate when referring to collaboration between the health sector and institutions from other sectors. It was noted that pursuing intersectoral collaboration reemphasizes the need to ensure multidisciplinary collaboration as well, especially with regard to the plan`s approaches and Objective 3.
Awareness: Delegates suggested addressing the issue of awareness in the vision, goal, objectives and actions of the Plan
CRPD ratification: Delegates remarked that Member States that have not ratified the Convention on the Rights of Persons with Disabilities (CRPD)must not to be excluded from the action plan. Requests to avoid references to the CRPD such as “in line with” or “in accordance with” were put forward.
CBR: It was noted that the plan’s approach to CBR should include rehabilitation strategies and actions in primary care, including programs that involve the community and assistive technologies. A concern raised several times during the consultations was that, in addition to expanding the availability and accessibility of services, attention should be given to improving the quality of existing offers.
Overlap between Objectives 1 and 2: Delegates suggested a review of Objectives 1 and 2 to clarify their respective scope and to avoid overlap of the proposed actions.
Crosscutting issues: Delegates agreed that all proposed actions of the plan must consider issues such as governance, capacity building, financing, and an integral health approach.
Success indicators: Delegatessuggested the development of success indicators for all actions of the plan in the areas of care, access, quality, rehabilitation, habilitation, information, financing, etc.
Introduction
Title and Preamble
Life-course approach: Include the phrase "from birth to old age" in Paragraph 4.
Prevention of disabilities: Although the action plan is directed at improving the health of people with disabilities and considers prevention only in so far as persons with disabilities require the same access to preventive services as others, delegates emphasized the general need to prevent health conditions that may result in disability through early identification.
Vision and Goal
Biopsychosocial welfare: Suggested includingthe notion ofbiopsychosocial welfare in the vision.
Access to health services: Emphasize the need to expand health services.
Human rights: Greater emphasis on human rights compliance.
Guiding Principles and Approaches
Families of people with disabilities: Delegates noted that he plan would benefit from the inclusion of the families and communities of people with disabilities in the guiding approaches.
Universal accessibility: Include universal health care accessibility in guiding principles, i.e. inclusion of people with disabilities to access, use and enjoyment of health products and services in a standardized, secure and efficient manner.
Life course approach: Include an integral health care approach covering the entire life course, including continuum of care.
Objective 1
General comments: Revise the text on Paragraph 21 to ensure that it addresses all aspects of the right to health as defined by the WHO; include access to sexual and reproductive health care in the introductory paragraphs to this objective; more clearly indicate the involvement of education and employment in access to health care and poverty in paragraph 24, in addition to the problems presented by barriers to information and negative attitudes.
Success indicators:Include existing indicators in health information systems that measure access to health services for people with disabilities; evaluate every two years if the actions are being executed in accordance with the plan; include instruments such as statistical reports and health surveys.
Proposed actions:Identifying competencies in the health sector should be included under the inputs for Member States; the wording“promote” active participation of disabled is not strong enough and should be changed to"ensure" under Action 1.1; the fact that people with disabilities are not usually considered a priority group in the health sector should be emphasized in the title of Action 1.2.
Objective 2
General comments: Separately define and elaborate on importance of habilitation, rehabilitation and assistive technology; consider community intervention as a tool for human development; contradiction or little coherence in the text between the social and the biomedical model; ensure that assistive technologies areappropriate, safe and cost-efficient in relation to performance – define most appropriate technologies, i.e. preferredoptions with regard to access, safety, affordability etc.; emphasize the state’s key role in funding and promoting the development of new technologies.
Success indicators:Delegates encouraged including bothoptions a) and b)forSuccess Indicator 2.1 and supported the incorporation of indicators 2.3, 2.4, 2.6, 2.7 and 2.8 (see the concept paper on success indicators on the DAR website).
Proposed actions:Encourage creation of national networks of rehabilitation services in inputs for Member States under Action 2.1; stress the need to expand and strengthen habilitation and rehabilitation services and assistive technologies under Actions 2.1 and 2.4; remove “Implement measures to improve recruitment and retention of specialist rehabilitation personnel particularly in rural and remote areas” from the input suggested for national and international partners – is seen as a responsibility of Member States;encourage Member States to build and strengthen interdisciplinary teams with adequate financial and technical support; highlight the need to train personnel for early identification, assessment and referral to rehabilitation; add the development of training standards for different types and levels of rehabilitation personnel as an input for Member States under Action 2.4; define accessible rehabilitation services at all levels of care for all types of disabilities.
Objective 3
General comments:Ensure collection of appropriate data, both qualitative and quantitative, and nationally and internationally comparable; define tools such as surveys, censuses and records;ensure methodological consistency and create an inclusive information system (regarding age, gender and intercultural issues) accessible to users; consider linking Objective 3 with the ICF – harmonize language and criteria to facilitate international dialogue; advise Member States to adopt the ICF and train staff for its implementation; add causes of disability and their characteristics to introductory paragraph, as well as the incidence and prevalence of disability; emphasize the critical importance of informed consent for research and ensure that persons with disabilities have access to the training needed to be objects and subjects of the investigation; broaden spectrum of research beyond the collection and management of data and encourage research on disability in universities.
Proposed actions:Inputs for Secretariat – create, update, publish and disseminate evidence-based guidelines for Member States; conduct research on the investment of each country on health care for peoples with disabilities and investigate the cost-effectiveness of the benefits provided to people with disabilities; Inputs for Member States – contribute to the management and allocation of financial and technical resources to ensure that disability is a research and data collection priority.
Operationalization and implementation of the plan
Situation analysis and implementation: Conducta situation analysis for each country and allproposed actions to determine the priority areas for implementing the plan. Devise national implementation strategiesfor each action and objective in which each county must prioritize the most urgent activities and outline measures for their implementation.The responsibility for implementation in each Member State should liewithin the Ministry of Health or the equivalent institution.
Promotion and dissemination: Disseminate the final version of the action plan to all stakeholders and provide information through the PAHO/WHO, websites, social media and personal networks. Make plan available in accessible formats and as many languages as possible. Establish an information platform on the action plan and keep this resource updated. Later in the process, publish the results for each country regarding each objective.
Monitoring and evaluation: Gather regional meetings/global coordination centers to review the progress on priority actionsin each Member State and to share successful experiences and identify best practices across countries. Implement a system for reporting on the progress of the action plan as required by the World Health Assembly, and designate responsibilities for monitoring and evaluating the implementation of the plan, e.g. by designating a coordinator (or team) for monitoring the activities related the national plans. Assessments and monitoring be conducted every two years to measure impact. Include intermediate goals and evaluation mechanisms for updating the plans.
Intersectoral linkages at all levels: Delegates agreed on the importance of involving the ministries of education and sports, especially in relation to Objective 1, Action 1.5 and Paragraph 32. Cultural and sports activities are vehicles that appeal to decision makers and society, thus creating a connection that can humanize society. Also, international organizations are essential partners in making the implementation of the plan a cooperative/collaborative endeavor and should work to facilitate the establishment of partnerships between countries.
Stakeholder participation: Involve organizations of persons with disabilities, persons with disabilities and their families in the development, implementation and evaluation of plans in each country.
Participants
Member States:
1.Argentina / 11. Jamaica2.Belize / 12.Mexico
3.Bolivia / 13.Panama
4.Brazil / 14.Paraguay
5.Chile / 15.Peru
6.Costa Rica / 16.DominicanRepublic
7.Ecuador / 17.Surinam
8.El Salvador / 18.Uruguay
9.Guatemala / 19.USA
10.Guyana
Special guests
- CBR Network of the Americas (Colombia)
- The National Institute of Rehabilitation of Mexico
- NGO Network of People with Disabilities and their families in Latin America (RIADIS).
- Karl Heusner Memorial Hospital
- The National Federation of the Blind (FENCE, Ecuador)
- The Ecuadorian Federation for Peoples with Disabilities (FEPAPDEM, Ecuador)
- The Ecuadorian Federation of Deaf People (FENASEC, Ecuador)
- The International Society of Physical and Rehabilitation Medicine (ISPRM)
International Organizations
- Andean Health Organization
Experts
Armando Vásquez, PAHO/WHO Regional Disability Advisory
MarielaCanepa, PAHO / WHO Argentina
Carlos Santos-Burgoa, PAHO/WHO Director of Non-communicable Diseases and Mental Health
VíctorArauz, PAHO/WHO Representative of Ecuador
ZohraAbaakouk, PAHO / WHO Brazil
Alana Officer, WHO Coordinator for the Disability and Rehabilitation Team (DAR)
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