Technical brief for the post-2015 consultation process Equal access to health and rehabilitation Equality, human rights and sustainability are the three core principles that the UN System Task Team suggests should underpin the post-2015 global development framework1. Inclusive social development is one of the four dimensions where progress will be needed in the coming years to build a secure and sustainable world for all. It includes, among others, universal access to quality health care, water and sanitation, and food and nutrition security, which are affordable to marginalised groups, such as persons with disabilities2. Fifteen per cent of the world’s population are people with disabilities – over one billion people. One in five of the world’s poorest people have disabilities3. Increasing evidence suggests that, as a group, people with disabilities experience poorer levels of health than the general population4 and often spend more of their income on medical expenses than other groups in society5. Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) and the WHO constitution6 together with the Alma-Ata Declaration on primary health care7, states the right for everybody to attain the highest standard of health care, including health related rehabilitation, without discrimination. Access to rehabilitation, as stipulated in Article 26 of the CRPD, is important to enable persons with disabilities to be independent through supporting their full physical, mental, social and vocational ability, for inclusion and participation in society. Rehabilitation and access to assistive devices and technology are pre-conditions for full inclusion and participation. Ensuring that the post-2015 global development framework is inclusive of and accessible to persons with disabilities, and in particular ensuring that targets and indicators for access to health and rehabilitation services are disability inclusive is essential, and a matter of equality and human rights. Key recommendations 1. Universal access to health for all, built on principles of equality, human rights and sustainability8 should underpin health targets. 2. Social Protection Floors, as promoted by ILO and WHO, need to be adopted as they would promote access especially for persons with disabilities9. 3. A new global development framework should a) addresses causal explanations of poverty and poor health and, b) take into account the global distribution of poverty shifting to middle-income countries. 4. Disability-inclusive health targets and indicators should adhere to the principles of empowerment, participation, equality and non-discrimination. 5. Data and statistics, including epidemiological studies, need to be disability disaggregated. 6. People with disability are equally affected by old and new health challenges; therefore, a comprehensive response to improving access to health for all has to include men/boys and women/girls with disabilities, as well as their families, Disabled People’s Organisations and/or legal representatives in finding and implementing solutions. 7. Rehabilitation services must be considered within mainstream health and social policies as they are often crucial for obtaining the best possible health as well as equal opportunities for education, employment and social and political participation. This includes access to affordable, appropriate and quality ensured technical aids and assistive devices. 1 Key principles for inclusive health and rehabilitation systems Disability-inclusive health policies promote services that are accessible and acceptable, affordable, available, accountable and are of good quality and appropriate10. A cross-cutting principle is participation, which ensures that people with disabilities and their representatives are included in the planning, delivery and monitoring of health and rehabilitation services. Accessibility and Acceptability Prohibit discrimination against persons with disabilities when accessing health care, rehabilitation services, food or water, health insurance, and life insurance. This includes making the environment accessible. Health promotion and prevention must be accessible to people with disabilities, especially information on HIV/AIDS prevention, immunisation, reproductive health and family planning measures. Promotional materials should include disability awareness. Disabled People’s Organisations should be encouraged to actively participate in health promotion and disease prevention programmes. Health and rehabilitation services should take into account gender differences and cultural norms that are acceptable to the population; they should pay specific attention to the needs of people with intellectual disabilities, people who are deaf blind, or with psychosocial disabilities. Health workers should be trained on disability issues and give the same quality care to people with disabilities as to others. Health workers must ensure the right to reproductive health of women and girls with disabilities. Affordability Ensure that persons with disabilities have access to the same choice, quality, and standard of free, or affordable, health care as other people. Access to free or affordable preventive, curative and rehabilitative health services in rural and urban areas. It is more common for persons with disabilities to report an inability to afford health services than people without11 and at the same time face multiple barriers accessing health services12. Contributions such as social insurance and co-payment for health services must be affordable and fair, and take into account the individual’s ability to pay. Full access will be achieved only when governments, through pre-payment and pooling of funds, cover the cost of access to health and rehabilitation services for the poorest people, including persons with disabilities13. Availability Rehabilitation services need to be available close to where people live, and Community-Based Rehabilitation (CBR) programmes, together with primary health care are well placed to provide basic services. Early intervention and treatment services should be developed as close as possible to where people live. CBR programmes have the potential to facilitate access to health care for persons with disabilities14 2 Persons with disabilities have a greater need to access both general and more specialised health services; however they often experience higher levels of unmet health needs than people without a disability15. Quality and Appropriate Health and rehabilitation research as well as monitoring and evaluation systems should include disability and be promoted in collaboration with persons with disabilities themselves. The development and introduction of new information and communication technologies has the potential to be very beneficial for persons with disabilities; they need to be developed in coordination with Disabled People’s Organisations, taking into account different types of accessibility requirements. Sustainable health systems and human resource development Health service provisions at the local level, especially in rural areas and urban low-income settings are under-funded and inefficient; they also suffer from a shortage of staff and in addition receive few incentives and resources to address the needs of the poorest, including persons with disabilities16. An intersectoral approach to improving health status through taking inclusive actions beyond the health system is important, notably through school health, water and sanitation, agriculture and food distribution, transport and human resource development. Collaboration with CBR programmes may enhance such an approach. General health service professionals are not trained on meeting the needs and adaptation requirements of persons with disabilities, and stigma towards this group is still present. Companies manufacturing equipment used by health professionals are not aware, or do not pay attention to the necessary modifications and adaptations of their equipment to meet the needs of persons with disabilities. There is a serious lack of rehabilitation professionals in many developing countries, especially occupational therapists, ortho-prosthetic technicians, speech therapists, psychologists and physicians specialised in rehabilitation. Innovative ways of increasing the number and type of rehabilitations professionals have to be integrated in human resource policies in the health sector at national levels. New technology and forms of training should be developed and used in this area to pool scarce resources in the health sector. Adequate referral systems are important for ensuring comprehensive outcomes of rehabilitation services, especially for persons with multiple impairments; such systems are however almost absent in developing countries. Rehabilitation services are often under-funded and not considered within the general health or social services system, resulting in many persons with disabilities having to pay for services and devices; this further exacerbates their exclusion and hinders access to school and employment. Data, statistics and research on rehabilitation outcomes are almost non-existent in poor countries and limited reliable and comparable data available. Such research is important for demonstrating the costeffectiveness and potential for inclusion in employment and education that well developed rehabilitation services have. 3 Community-Based Rehabilitation programmes and health Community-Based Rehabilitation programmes for an inclusive development should be enhanced to support access to health services. Linking primary health care to CBR programmes will have a double impact, making existing services more inclusive and reaching a higher number of persons with disabilities, especially in rural areas and low-income settings17. Access to rehabilitation is essential for many persons with disabilities to enable them to participate in the labour market or access livelihood opportunities, and education18. Rehabilitation services are an important aspect for the empowerment of persons with disabilities. Community-Based Rehabilitation programmes often organise the provision of basic rehabilitation services at local levels and complement more specialised services, but they often have limited coverage and challenges in remaining sustainable; thus they need to become part of the public health or social referral systems. “Community-Based Rehabilitation (CBR) programmes support people with disabilities in attaining their highest possible level of health, working across five key areas: health promotion, prevention, medical care, rehabilitation and assistive devices. CBR facilitates inclusive health by working with the health sector to ensure access for all people with disabilities, advocating for health services to accommodate the rights of persons with disabilities and be responsive, community-based and participatory”. [Extract from CBR Guidelines, Health component] Assistive Devices It is estimated that 105 million people across the world need an appropriate wheelchair19. An estimated 515% of people in low and middle-income countries who require assistive devices/technologies actually receive relevant equipment20. Hearing aid producers and distributors estimate that hearing aid production currently meets less than 10% of global need, and that less than 3% of hearing aid needs in developing countries are met annually21. Studies in Malawi and Zambia indicate gender disparities in access to rehabilitation services and assistive devices, where women with disabilities have less access to services than men with disabilities22. Specific diseases and impairment groups Sensory impairments Integrating eye health and rehabilitation services within mainstream health systems, particularly at primary level, increases access and is cost effective. An estimated 80 % of eye problems can be tackled at community level and many rehabilitation needs can also be covered. Up to 80% of blindness is avoidable (it can be either prevented or treated). Strategies to improve eye health and reduce blindness are feasible, proven and highly cost effective. Less than 0.1% of people who are deaf or hard of hearing and/or who are blind or have visual impairments receive appropriate support23. 4 Non-communicable diseases Non-communicable diseases account for two out of three deaths and half of all disability worldwide24. Prevention, early diagnosis and treatment of non-communicable diseases are critical for human development and the post-2015 framework. Adults with developmental disabilities have an increased risk of NCDs but are seldom reached by preventive and promotional services. Mental health Studies show that between 76% and 85% of persons in developing countries with mental health problems do not receive adequate treatment25. Prevalence of diabetes among people with schizophrenia is as high as 15%26. Neglected Tropical Diseases (NTDs) Globally, NTDs affect 1.4 billion of the poorest people and another 2 billion people are at risk. Because of their adverse effects on child development, maternal morbidity and worker productivity, NTDs have a major impact on poverty27. Women with a disability are more likely to be infected with HIV or other sexually transmitted diseases28 and less likely to receive information about reproductive health services. Case study: Uttarakhand Cluster of the Community Health Global Network (CHGN)29 Nossal Institute of Global Health The Uttarakhand Community Health Cluster is a unique network of community health programmes based in the Northern India state of Uttarakhand. Launched in 2008 as part of the Community Health Global Network, the cluster now has forty member organisations covering a catchment area of approximately three million people. The members come together for mutual knowledge sharing and programme strengthening. During a biannual learning and sharing workshop, the Uttarakhand Cluster identified the need for knowledge, skills and resources to address a growing concern that persons with disabilities were excluded from the benefits of existing health programmes. This began the planning of a disability-inclusive development project across the cluster. Supported by the Nossal Institute for Global Health, a disability situational analysis was conducted to identify key stakeholders and areas of gaps and opportunities. Following an initial disability training workshop, representatives from each of the programmes collectively agreed upon goals to promote the inclusion of persons with disabilities into existing health programmes, including the following: 1. To ensure persons with disabilities have equal access to and benefit from all health and development activities in the forty cluster programmes. 2. To strengthen the existing disability specific interventions and initiate some further disability-specific projects in the cluster. To empower persons with disabilities to work for the realisation of their rights through the establishment and networking between self-help groups and Disabled People’s Organisations. Outcomes included training programmes for project staff and community health volunteers, with a focus on awareness raising, addressing stigma, early identification and referral to disability services in the region. The 5 community also initiated a collaboratively produced disability awareness DVD. Three health professionals from the cluster completed an Australian Leadership Award Fellowship. One of these representatives has been appointed as the Cluster Disability Advisor to coordinate the implementation of disability-inclusive actions across the forty cluster programmes using the skills, tools and training programmes developed. Future directions Activities to be conducted in the next stage of the project include: Collecting baseline data to better understand the barriers experienced by persons with disabilities when accessing health services. Training cluster programme leaders and appointed disability coordinators from each of the programmes to facilitate, lead and review the implementation of disability-inclusion activities across the forty health programmes. Facilitating organisational assessments and development of action plans for each health programme to identify and implement: o mainstreaming activities (e.g. addressing physical barriers or skills and attitudes of health workers to ensure that persons with disabilities have equal access to health services), and o disability-specific programmes (e.g. improving capacity for rehabilitation, or the provision of assistive devices such as wheelchairs). Establishing, supporting and building the capacity of disabled People’s Organisations. Developing new CBR programmes in selected health services. Lessons learned Despite a commitment by the forty cluster programmes to ensure persons with disabilities benefit equally from community health programmes, the cluster has identified a long list of activities which at first appears to be overwhelming in the context of other competing priorities. However, the Uttarakhand Cluster has identified simple sustainable strategies for action, beginning first with awareness-raising activities, acknowledging that barriers extend beyond simply physical access to health centre buildings. These activities reflect a twin track approach including a variety of disability-specific measures, along with activities that ensure persons with disabilities are included in existing programmes. These strategies will be facilitated by the allocated focal points within the cluster, ensuring that persons with disabilities are actively involved throughout the planning, implementation and evaluation of programmes. One of the project staff reflected on the lesson he learnt about the value of participation for persons with disabilities when he said, “I have never worked with or had a friend with a disability. I never really understood what barriers they experience. Now I have new friends and I am excited about the changes we can make in our health programmes to ensure everyone is included”. Contact: Catherine Naughton, Director of Advocacy and Alliances, CBM catherine.naughton@cbm.org Read more about CBM at www.cbm.org 6 1 UN System Task Team on the post-2015 UN Development Agenda. “Realizing the future we want for all: Report to the SecretaryGeneral”, New York, June 2012, p. 23. 2 Ibid. pp. 25-2. 3 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press, p. 28. 4 Becker H. Measuring health among people with disabilities. Community Health, 2005, 29 (1S): 70S–77S. 5 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press. 6 Constitution of the World Health Organization. Geneva, 2006. http://www.who.int/governance/eb/constitution/en/, accessed 25th July 2012. 7 WHO. Declaration of Alma-ata, 1978. Accessed on 30th of July 2012 on: http://www.who.int/publications/almaata_declaration_en.pdf 8 UN System Task Team on the post-2015 UN Development Agenda. “Realizing the future we want for all: Report to the SecretaryGeneral”, New York, June 2012. The report puts forward these three fundamental principles that should underlie the post-2015 development framework, and these are principles that also underpin an inclusive development approach. 9 International Labour Organization. (2011). “Social protection floor for a fair and inclusive globalization”, Report of the Social Protection Floor Advisory Group, Geneva: ILO. 10 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press, p. 65. 11 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press. 12 Van Leit, B., Rithy, P., and Channa, S. (2007). Secondary Prevention of Disabilities in the Cambodian Provinces of Siem Reap and Takeo: Perceptions of and use of the health system to address health conditions associated with disability in children. Report prepared for Handicap International Brussels. Retrieved from http://siteresources.worldbank.org/DISABILITY/Resources/News--Events/BBLs/070517HIrptCambodia.pdf 13 WHO. (2010). “The World Health Report. Health Care Financing. The Path to Universal Coverage”. Geneva: WHO Press. 14 WHO, UNESCO, ILO, and IDDC. (2010). CBR Guidelines – Health Component. WHO Press: Geneva. 15 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press. 16 http://www.unmillenniumproject.org/documents/Slumdwellers-complete.pdf quotes 900 million people, of which up to fifteen per cent (see World Health Organization and World Bank (2011) World Report on Disability. Geneva: WHO Press.) could be persons with disabilities. 17 WHO, UNESCO, ILO and IDDC. (2010). “Community-Based Rehabilitation. CBR guidelines”, Geneva: WHO. As outlined in the health component of the CBR guidelines, CBR programmes can assist people with disabilities to overcome access barriers, train primary health care workers in disability awareness, and initiate referrals to health services. 18 The World Disability report by WHO and the World Bank defines rehabilitation as “a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments”. A distinction is sometimes made between habilitation, which aims to help those who acquire disabilities congenitally or early in life to develop maximal functioning; and rehabilitation, where those who have experienced a loss in function are assisted to regain maximal functioning. 19 Motivation. (2012). Mobility: Helping to achieve freedom through mobility. Retrieved from http://www.motivation.org.uk/what-wedo/our-programmes/mobility/ 20 WHO. (2006). Assistive Devices/Technologies. Retrieved from http://www.who.int/disabilities/technology/en/ 21 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press, p. 102. 22 Ibid, p. 103. 23 WHO. (2001). World Health Report in the New Internationalist (2005) ‘Disability in the Majority World’. New Internationalist: Global 24 Beaglehole R, et al. UN High‐level Meeting on Non‐communicable Diseases: addressing four questions. The Lancet. 13 June 2011. 25 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press, p. 62. 26 WHO and World Bank. (2011). “World Report on Disability”, Geneva: WHO Press, p. 59. 27 In addition, the disease burden of NTDs is more than double that caused by tuberculosis. Hotez, PJ. Kamath, A. Neglected Tropical Diseases in Sub-Saharan Africa: Review of Their Prevalence, Distribution, and Disease Burden. PLoS Negl Trop Dis 3(8). 28 Groce, N. (2003). “HIV/AIDS and people with disability”, Lancet, 361, pp. 1401–1402. 29 CBM. (2012). “Inclusion Made Easy: A Quick Program Guide to Disability in Development”. Melbourne: CBM Australia. The case study was developed in coordination with Nossal Institute of Global Health. 7