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Table 4 ‘Statements’ and examples of proposed outcomes

From: Promoting good policy for leadership and governance of health related rehabilitation: a realist synthesis

Statements (Policy recommendations)

Examples of proposed outcomes

1. What works in including persons with disabilities in decision-making regarding the development, implementation and monitoring/evaluation of policies/plans?

 1. Implementing the UNCRPD requires persons with disabilities to be involved in developing, implementing and evaluating rehabilitation policies, and for the capacity of persons with disabilities to be increased to strengthen their involvement.

1. Supports responsiveness to needs, and shared control over agenda setting.

 2. Disability desks and focal persons should be established in all government ministries. Where persons with disabilities have appropriate levels of expertise and understanding given the context, they should be preferred candidates.

2. Strengthens focus on disability issues.

 3. As an interim measure to promote inclusion, there should be a quota of policymakers who are persons with disabilities, which could be filled by persons with disabilities who have appropriate training and qualifications.

3. Prioritizes rehabilitation and supports participation of persons with disabilities in policy development.

 4. New and advanced leadership pathways, such as volunteer opportunities, service on boards/committees, and leadership development workshops, should be created for disability advocates to represent persons with disabilities in service governance roles.

4. Equips service-users with skills to participate in advocacy and policy planning.

 5. Research for rehabilitation services should be conducted with a participatory ethos. This requires that the research skills of persons with disabilities be developed, that the ability of researchers to meaningfully involve persons with disabilities is developed, and that adequate resources are provided by governments to increase such education/skill development.

5/6. Allows persons with disabilities to gain influence over research that guides policies.

 6. More ‘emancipatory research’, or participatory research, should be conducted, allowing persons with disabilities to gain greater influence over decision-making for policies.

 7. Helping representatives of different types of disabilities to identity and express common challenges could strengthen their influence in service provision and ensure service provision responds to the full range of the diversity of disability.

7. Strengthens advocacy.

 8. Service users of rehabilitation services should also be involved in the governance of such services, including for example on advisory and review panels and boards of steering committees.

8. – Strengthens programme sustainability.

– Improves relevance of programmes.

 9. ICT (information and communication technologies) are promising technologies for persons with disabilities to participate in e-governance in the long-term, including planning and monitoring.

9. Supports participation of persons with disabilities in governance.

 10. Regular community analyses, context surveys, and user needs assessments are necessary to ensure that e-governance meets the needs of persons with disabilities.

10. – Assesses needs of subgroups of persons with disabilities to participate in e-governance.

– Creates a comprehensive system design.

 11. Statistical information and training should be available and accessible to persons with disabilities and DPOs so that they can meaningfully contribute to and engage with rehabilitation policy processes.

11. Creates a sense of ownership of research for persons with disabilities.

 12. The participation of persons with disabilities, their families and their representatives in the planning, evaluation and monitoring of rehabilitation services should be mandated at local, national, regional and international levels.

12. – Supports service-user satisfaction.

– Supports service efficiency/effectiveness.

2. What are the features of national legislation/policies that work to support the development and provision of rehabilitation services?

 13. A State’s Constitution and antidiscrimination laws should facilitate the realization of disability rights.

13. Strengthens legal and policy support for persons with disabilities and service-users.

 14. It is critical that measures to support accountability and transparency in the provision of rehabilitation services are indicated in policies.

14. Supports accountability/transparency, so that governance creates inclusive, responsive and fair processes and outcomes, and public trust in a social system.

 15. Rehabilitation should be integrated into general health policy and health sector reform plans, from primary care to tertiary hospitals with focus beginning on primary care.

15. Supports programme continuity.

 16. CBR policies should be incorporated within existing health systems and with local and national health policies and legislation to ensure continuity and to secure annual budgets and other resources, while still allowing for a degree of flexibility of CBR projects.

16. Strengthens programme continuity and securing of resources for CBR.

 17. Policies relating to rehabilitation should uphold the following seven primary aims for the provision of rehabilitation services (17–23 below):

  Safe: Avoid injury to people, including physical or psychological harm, from the care that is intended to help them.

17. Service-users avoid injury from care.

 18. Effective: Provide services based on available scientific evidence to all who could benefit and refrain from providing services to those not likely to benefit.

18. Service-users receive appropriate care based on scientific evidence.

 19. Person centred: Provide care that is respectful of and responsive to individual preferences, needs and values and ensure that service-users’ values guide all practitioners’ decisions. Awareness raising and education of service-users with regard to treatment options and human rights is important.

19. – Service-users receive appropriate, respectful and understanding care.

– Service-users exercise choice.

 20. Timely: Reduce waits and potentially harmful delays for both those who receive and practitioners who provide care.

20. Reduces waits for services.

 21. Efficient: Avoid waste, including waste of equipment, supplies, ideas, and energy and take into account views and suggestions of service-users and their families.

21. Creates a structured system that matches resources with service demands.

 22. Equitable: Provide care that does not vary in quality due to personal characteristics, such as gender, ethnicity, geographic location, socioeconomic status or type of impairment.

22. Supports justly distributed service provision based on need, including for vulnerable groups.

 23. Accessible: Provide care that is accessible to all, including vulnerable groups, such as ethnic minorities, with regards to physical, economic, and information access to health services.

23. Strengthens accessible health care.

3. Do any of the listed features of national legislation and policies have a greater risk of adverse effect on particular groups of people and types of services?

 24. Policies should recognize that disability may interact with other vulnerability factors that increase discrimination, e.g. women or children with disabilities.

24. Supports access to services for persons with disabilities who may experience double discrimination and multiple disadvantages (e.g. ethnic minorities with disabilities).

 25. Policies relating to rehabilitation should ensure that services are available to all groups of persons with disabilities, and allow disaggregation of data by subgroups that may be more vulnerable.

25. Supports access to services for all subgroups of persons with disabilities, such as persons with intellectual disabilities.

 26. To promote equitable and accessible rehabilitation services, policies should specify how the particular barriers that marginalize certain groups would be overcome and associated budgetary allocation plans should be defined.

26. Supports access to services for vulnerable groups, such as children with special needs.

 27. In national policies, specific mechanisms of exclusion in accessing health services should be addressed for different subgroups of persons with disabilities.

27. Policies support human rights and social inclusion in service provision.

 28. The participation of persons with severe or multiple disabilities and persons with mental disabilities and/or their families/representatives in policy development should be prioritized/emphasized on an equal basis with others, with priority in contexts where they are significantly excluded from policy development.

28. Strengthens inclusion of subpopulations of persons with disabilities, such as persons with mental disabilities, who experience specific barriers to accessing services.

4. What are the features of a rehabilitation strategy/plan that work to achieve rehabilitation objectives?

 29. A national Rehabilitation Plan should be in place, and developed based on the UNCRPD, other international human rights instruments, and needs based assessments, with clear implementation and monitoring protocols.

29. Strengthens policy implementation.

 30. CBR should be implemented by mobilizing partnerships, which include CBR programmes, government Ministries, persons with disabilities and their families and representatives, DPOs and NGOs.

30. Creates shared funding, resources, expertise, and ownership of programmes.

 31. Strong inter-sectoral coordination, including coordination of funding, for all health related rehabilitation services, including CBR, is important with regards to provision of rehabilitation services.

31. Creates coherent mandates across governmental departments for services.

 32. Health related rehabilitation should be integrated into a broader and comprehensive strategy to provide services for people who need rehabilitation services and persons with disabilities in all aspects of society, including health, employment, and education.

32. Strengthens access to services in all aspects of society for service-users.

5. What are the key steps to developing national legislation/policies and related strategies/plans for rehabilitation?

 33. Policymakers should receive rights based education/training to adopt a disability lens in the formation of all relevant policies.

33. Improves status and prioritization of rehabilitation amongst policymakers.

 34. Governments should proactively consult with persons with disabilities, their families, DPOs, the private sector, NGOs, and international organizations throughout policy development.

34. – Supports service effectiveness.

– Increases service-user satisfaction.

 35. National authorities should align policy objectives and implementation with international instruments concerning the rights of persons with disabilities, such as the UNCRPD.

35. Provides a holistic approach for policies as the UNCRPD covers broad needs of service-users.

 36. Mechanisms for sharing of information and experiences between countries and across regions should be strengthened for the purposes of national, regional, and local policy development.

36. Strengthens shared learning regarding service provision and policy development.

 37. Information collected on disability should be disseminated proactively, succinctly, quickly, and in a language and format that decision-makers, as well as persons with disabilities, can easily and quickly understand.

37. Strengthens participation of persons with disabilities in decision-making.

6. What factors facilitate or impede the implementation of national legislation/policies and related strategies/plans for rehabilitation?

 38. A national Implementation Plan should be devised to support the implementation of policies for rehabilitation. Where a Rehabilitation Board exists, it should contribute to devising the plan.

38. Strengthens policy implementation.

 39. A coordination mechanism, such as a National Disability Board, should be established to oversee the implementation of rights of persons with disabilities.

39. Oversees policy implementation, and coordinates national inter-sectoral liaison on disability.

 40. A national Code of Practice should be formulated through input from service-users and aligned with the UNCRPD to implement policies on rehabilitation.

40. Supports implementation of policy and legislation; harmonizes public health laws.

 41. Development of strategic alliances between the Rehabilitation unit and PCD of governments is important for the equitable implementation of policies for rehabilitation.

41. – Supports shared strengths/resources.

– Creates co-ownership of a programme.

 42. The alignment/integration of rehabilitation programmes with well recognized, preexisting models of healthcare delivery within the MoH can strengthen programme delivery and the implementation of policies for rehabilitation.

42. Supports programme sustainability.

 43. Governments should provide equitable and nondiscriminatory levels of resources to implement policies for mental health services.

43. Promotes realizing rights in the lives of mental health service-users.

 44. All government Ministries should have budget allocations to make services inclusive and accessible.

44. States comply with Article 9 of UNCRPD.

 45. Governments should provide adequate funding and resources within their budgets to ensure the availability of human resources for implementation of policies for rehabilitation.

45. Provides sufficient numbers of trained rehabilitation workers.

 46. CBR implementation is dependent on the support of community leaders, government, and persons with disabilities, DPOs, NGOs, rehabilitation professionals and paraprofessionals and the community.

46. – Increases CBR sustainability.

– Enhances skills of those working in CBR.

7. What works in monitoring and evaluating rehabilitation legislation/policies and strategies/plans?

 47. National, regional and local Mental Health Review Boards should be in place to support mental health service-users and the provision of mental health services with participation of/contributions by service-users if prioritized by representative organizations in each context.

47. – Oversees policy implementation, and coordinates inter-sectoral liaison.

– Protects the rights of rehabilitation service-users by investigating abuse and exploitation.

 48. Governments should provide adequate levels of funding for the collection of disability statistics using both quantitative and qualitative research methods, including disaggregated information, to enable a situational analysis of disability.

48. – Informs planning.

– Creates political momentum by identifying successful interventions.

 49. A well-developed and well-implemented health management information system, which includes the collection of disability disaggregated data, should be in place with ethical privacy rules for management of data.

49. – Supports policymaker decision-making.

– Assists evaluation of CBR programmes.

 50. Government national, regional, and local CBR focal persons should be in place and regularly monitored.

50. Oversees CBR programmes.

 51. A continuous review of processes is critical to identify areas of success and failure of any part of the process of the development, implementation and monitoring of policies.

51. Reviews policies to identify strengths and lapses in response to changes in demands, needs of service-users, and research findings.