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Missing Billion Toolkit - System Level Assessment

The Missing Billion Initiative reports have highlighted that people with disabilities on average experience worse health than others in the population, across the Sustainable Development Goal 3 targets. One of the reasons for the health inequity is that people with disabilities often have difficulties accessing appropriate and quality healthcare services due to wide-ranging barriers and discrimination.

The Missing Billion Initiative has worked with a variety of stakeholders to co-design an approach and tool to assess the progress of health systems towards disability-inclusiveness.

The System Level Assessment (or SLA) includes a set of indicators, steps and tools to support actors to identify where there is progress and where gaps remain in order to plan action. Repeated applications of the SLA will allow monitoring of trends over time, and potentially assess the impact of specific interventions.

In 2023, MBI and Special Olympics International collaborated to develop an additional module on Intellectual and Development Disabilities (IDD).

WHAT YOU WILL FIND ON THIS PAGE:

OBJECTIVES | FRAMEWORK | PROCESS | INDICATORS | APPLY THE SLA | IDD MODULE

 
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Objectives of the assessment

 
 

Collate data about the health system in order to set a benchmark for disability inclusion in the health sector.

Identify the ways in which the health system could be more inclusive of people with disabilities.

Continue to monitor progress over time using the indicators.

 

Missing Billion Health Systems Framework

The assessment and indicators were developed based on the health system framework (shown in figure below). The framework identifies key leverage points in the health system for moving towards greater disability inclusion. It also includes expected changes in outputs and health outcomes status to monitor whether health system improvements are having the intended impact.

Disability inclusion in the health sector is determined by both the system and the service delivery. Systemic considerations such as governance and financing should include mechanisms that ensure equitable access for all.

4 levels of the framework: System (governance, leadership, financing, data), Service Delivery (awareness, affordability, human resources, health facilities, rehab and AT), Outputs (effective service coverage), and Outcomes (health status)

Diagram showing the different elements of health systems. System: governance, leadership, health financing, data and evidence. Service Delivery: Autonomy and Awareness, Affordability, Human Resources, Health Facilities, Rehabilitation Services and AT. Outputs: Effective Service Coverage. Outcomes: Health Status.

 
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Assessment Process

 

Who should lead the assessment process?

  • Ideally the disability focal point or disability inclusion unit in the Ministry of Health (MOH) will lead the process. If such a unit does not exist, then it may be led by the unit responsible for primary care, equity or vulnerable populations for example.

    The lead will establish a task team and consult with other stakeholders throughout the process.

    The process could also be led by and NGO or an OPD in coordination with the MOH.

  • Throughout the SLA, it will be important to ensure the active involvement of people with disabilities in the planning, decision-making and monitoring related to the assessment.

    As people with disabilities are actively involved, ensure that all processes/activities are inclusive and accessible (e.g., hire a sign language interpreter, if necessary, ask task team members to speak slowly)

  • A task team should be established, led by the assessment lead. Teams are typically composed of 5-7 members but could be larger depending on stakeholder involvement needed.

    The team should include representatives from relevant departments in the Ministry of Health, persons with disabilities and organizations of persons with disabilities, technical and NGO partners and donor representatives.

Other potential applications of the assessment:

  • Disability rights groups use it to identify gaps and advocate for change with the government

  • Researchers integrate indicators in their research

  • Disability inclusion programs integrate indicators as part of monitoring

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Process Timeline

The overall process should take about two to three months including the steps of inception, conducting the assessment, and strategic planning. The indicator set has been developed to be drawn from existing sources to help keep the process streamlined.

  • An assessment lead should be selected from the Ministry of Health, preferably with a person with disabilities leading or co-leading. A task team should be assembled to steer the planning, conduct and follow-up to the assessment. A task team kick-off meeting should be organized where key facts about disability and health are shared and the team develops a terms of reference to be clear about how they will work together over the course of the assessment. Suggested activities for the task team in the inception phase include the following:

    MAP KEY STAKEHOLDERS:

    Identify organizations and influential people who should be involved in and/or informed about the assessment, including to support it politically and financially, and at what points in the process they should be engaged using the stakeholder mapping tool.

    MOBILIZE SUPPORT:

    Meet with key decision makers and financial partners to sensitize them about the need for disability inclusion in the health sector and to mobilize the political will and financial support needed to conduct the assessment and implement recommendations from the assessment findings.

    SENSITIZATION MEETING/INCEPTION WORKSHOP:

    If possible, organize a meeting or workshop with a broader array of stakeholders to sensitize them to disability inclusion in the health sector and engage them in the process. Earlier engagement may assist with ensuring their participation and support in planning and implementing actions based on findings from the assessment. The meeting might take two possible forms:

    • a brief one-to-two-hour event with sensitization activities and information sharing

    • a half-day workshop that involves stakeholders in some of the planning for the assessment, such as identifying data sources and other stakeholders to involve.

    You should provide time for a person with disabilities or a caregiver to share their experience.

    TOOLS:

    • Stakeholder mapping tool

    • 1-page crib sheet on terminology for disability inclusion

  • Once all the political and financial support has been mobilized, the task team can then focus on conducting the assessment. The following are suggested activities in this phase.

    PLANNING A WORKSHOP

    It is suggested that the assessment lead organize a one-day workshop of the task team to develop the following:

    • Workplan with timelines assigning roles and responsibilities

    • Initial mapping of data sources for each of the indicators

    If a workshop is not feasible due to resource or member availability constraints, then these activities could be completed over a series of several meetings, whether in person or online.

    COLLECTING AND ANALYSING DATA

    The assessment lead and task team will need to do the following to ensure the data is collected in a timely manner.

    • Identify person(s) or institutions that are responsible for collecting the data. It might be an expert consultant, consultant team or research institution that is responsible.

    OR

    • Assign different members of the task team to collect different aspects of the data for the team.

    Periodic Reach out to the Missing Billion team obtain the necessary toolsmeetings to review progress can help to keep the data collection on track and troubleshoot any problems that arise.

    TOOLS:

    • Reach out to the Missing Billion team obtain the necessary tools

  • After the data collection is completed, the task team should come together again to put together and/or review the report and plan for dissemination and strategic planning. The following are proposed activities for this stage.

    ASSEMBLING THE REPORT

    The assessment lead or contracted consultants or institutions should produce a draft report of the findings.

    REVIEWING THE REPORT

    Once the report is developed, bring the task team together for a one-day workshop to review and discuss the report.

    DISSEMINATION EVENT

    If feasible with the funding available, hold a dissemination meeting with a broad set of stakeholders. The meeting would include the following:

    • Presentation of the findings

    • Opportunities to provide feedback and comments on the findings

    • Discussions to elicit initial thoughts about follow-on plans

    The participants would be similar to the sensitization/ inception meetings, and could either be a brief event to mainly share findings or slightly longer to include some interactivity.

    STRATEGIC PLANNING

    A meeting should be organized by the assessment lead with key senior leaders in the Ministry of Health to translate the findings to strategic plans and actions. During the meeting, the task team members should be present as well as any other government, multilateral or non-governmental partners who will be essential to move from assessment to action.

    In the meeting:

    • Prioritize three to four essential actions across different elements rather than producing an elaborate, comprehensive plan. If the country is just embarking on disability inclusion, these might focus on foundational policy and systems needs

    • Determine a plan for costing the activities, who is responsible for implementing them, and how they will be monitored

    • Identify sources of funding for the costed activities, either through government resources or donors

    The Ministry of Health might consider making the task team a permanent committee or creating a committee for oversight. The plan can then be reviewed each year and new actions added as the previous ones are achieved, enabling an evolution of progress.

    TOOLS:

    • Prioritization approach for strategic planning

 
 

Indicators

 
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Disability inclusion in the health sector is determined by both the system and the service delivery. Systemic considerations such as governance and financing should include mechanisms that ensure equitable access for all.

The sets of indicators for each component of the Missing Billion Health System Framework are listed below.

Download the SLA overview to see the definitions and metrics for each indicator.

 

 System

  • International regulations must be matched by appropriate in - country laws and policies that protect the right to health care for people with disabilities and outlaw discrimination on the basis of disability; accountability mechanisms must be in place to enforce this right.

    INDICATORS

    • UNCRPD – Ratification of UNCRPD by country

    • National law – Existence of a national law protecting the rights of persons with disabilities to health

    • National health policy – Existence of a national policy or decree on health for persons with disabilities

    • National Health Sector Plan(s) – Inclusion of people with disabilities in National Health Sector Plan(s)

    • National HIV plan – Inclusion of people with disabilities in National HIV plan

  • Issues around disability are clearly represented in the MoH and health sector structures and coordination mechanisms. Dedicated structures and leadership should also kick-in in times of crisis or disasters.

    INDICATORS

    • MoH leadership – Existence of a focal point/team/directorate in MoH that’s responsible for ensuring health access for people with disabilities

    • National health sector coordination – Formal representation of persons with disabilities (individual, or OPDs) in highest-level health sector coordination structure

    • Global Fund CCM – Representation of person with disabilities in Global Fund CCM

    • Pandemic preparedness structures – Formal representation of people with disabilities (individuals are representing OPD) in national COVID-taskforce

  • Health financing and/or health insurance coverage is available to support access to health for people with disabilities, including assistive technologies, specialized services, & any adaptations/improvements of routine services; health financing mechanisms allow adjustments to support effective service delivery

    INDICATORS

    • AT/rehabilitation budget – Funding for AT/rehabilitation in MoH (or devolved levels) budget

    • Disability inclusion budget – Budget (MoH or devolved levels) for role/department in MoH working on disability inclusion

    • Reimbursements – Reimbursement adjustment for services provided to patients with disabilities

  • Routine data is available to show what the health situation of people with disabilities and how to improve it; evidence is generated to understand and improve delivery of health services

    INDICATORS

    • Prevalence of disability – Existence of national data on prevalence of disability (from within last 10 years)

    • Routine health data – Existence of routine health data disaggregated by disability

    • AT coverage – Existence of data for coverage (% of need covered) of assistive technologies

    • Population-based data on disability and health – National disability survey done in last 10 years (including health data)

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 Service Delivery

  • People with disabilities make their own decisions about health care and are aware of their rights and options.

    INDICATORS

    • OPD advocacy – OPDs (Organisation of Persons with Disabilities) advocate on the right to health for persons with disabilities with government and NGO delivery partners

    • Autonomy and awareness – People with disabilities report autonomy and awareness about health access

    • Accessibility of health information – Health information is available in accessible formats

  • People with disabilities must be able to afford health care access.

    INDICATORS

    • Disability allowance – There is a disability allowance that is available to cover healthcare fees not covered by existing insurance or tax-based systems, e.g. travel to clinics, assistive technologies

    • Transport subsidy available for disabled people – Transport subsidy is available

    Health coverage – People with disabilities are fully covered for free healthcare through social health insurance, tax-based system, provision as part of disability allowance or any other stipulations

    • Co-pays – Any co-pays for services in either health insurance or taxation based systems are waved for persons with disabilities

  • Healthcare workforce is knowledgeable about disability and has the skills and flexibility to provide quality care to people with disabilities.

    INDICATORS

    • Training of medical doctors – Information about disability delivered as part of the national curricula for medical schools/colleges

    • Training of nurses – Information about disability delivered as part of the national curricula for nurses/nursing colleges

    • Training of CHWs (Community Health Worker) – Information about disability delivered as part of the national CHW training curricula

    • Representation in health workforce – People with disabilities are represented in the health workforce

    • Satisfaction – People with disabilities report that they feel well treated by health workers

  • Healthcare facility infrastructure is accessible for people with disabilities.

    INDICATORS

    • National accessibility standards – Existence of national accessibility standards

    • Accessibility of facilities – Accessibility audit of health facilities has been undertaken in the last 10 years

  • Rehabilitation health services (e.g. rehabilitation and assistive technology) are available, affordable and of good quality for people with disabilities

    INDICATORS

    • National assessments – National assessment on AT or rehabilitation (e.g. STAR or RATA) done in the last 10 years

    • Coordination – Coordination mechanism cross-Ministry for rehabilitation services and AT where more than 1 ministries involved

    • Trained workforce available to provide rehabilitation services and AT

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 Outputs and Outcomes (optional)

  • The coverage of services for people with disabilities must be equal to people without disabilities.

    INDICATORS

    • Modern contraception coverage – Women whose demand is satisfied with a modern method of contraception, disaggregated by disability

    • ARTs coverage – People with HIV receiving ART, disaggregated by disability

    • DTP 3 coverage – Children aged 12-23 months who have received diphtheria-tetanus-pertussis vaccine (DTP3), disaggregated by disability

    • Refractive error coverage – People with refractive error have coverage of glasses

    • NCD coverage – People with diabetes on treatment OR people with hypertension on treatment, disaggregated by disability

  • People with disabilities have the best possible health status, and don’t experience any difference in outcomes to people without disabilities (unless an underlying impairment would explain that).

    INDICATORS

    • Mortality – Overall mortality rate, disaggregated by disability

    • Diabetes – Prevalence of diabetes OR hypertension among persons aged 18+ years, disaggregated by disability (Global Monitoring Framework NCDs; indicator #12, indicator #11, WHO)

    • HIV – Prevalence of HIV, disaggregated by disability

    • Overweight and obesity – Prevalence of overweight and obesity among persons aged 18+ years, disaggregated by disability (Global Monitoring Framework NCDs; indicator #13, WHO)

    • Wasting – Prevalence of children wasted (moderate and severe), 0-59 months of age, disaggregated by disability; WHO Child Growth Standards mediann

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Applying the System Level Assessment

If you are interested in applying The Missing Billion System Level Assessment, please reach out to info@themissingbillion.org, with the heading “System Level Assessment”. We will provide you with the requisite tools and support, including:

  • a Microsoft Excel tool that contains the detailed SLA framework and scoring sheet

  • support on applying the SLA, best practices in the SLA process, and support in planning the implementation of interventions

  • guidance and support on compiling results and communicating them effectively to assessment lead

Throughout the SLA, we ask that you support the Missing Billion Initiative by providing:

  • a focal  point in your SLA task team to coordinate with The Missing Initiative

  • results of the SLA so that we may compile and draw learning from assessments of healthcare systems globally

Download SLA tool overview
See example results
 

Watch our webinar on our tool, with experience from Chile and Abu Dhabi and a presentation of the IDD module (more information below).

 

IDD Module

People with intellectual and developmental disabilities (IDD) face significant barriers accessing healthcare that is appropriate and responsive to their needs. Barriers include inaccessible health information, poor skills of healthcare workers, and reliance on carers to seek care. Consequently, health outcomes may be particularly poor for people with IDD, when compared to others in the population, or even other people with disabilities.

The Missing Billion Initiative and Special Olympics International jointly developed the IDD Module, as an add-on to the System Level Assessment (SLA). It may also be applied by itself as an advocacy tool to highlight particular issues in health access for people with IDD.

Following the same structure as the SLA, the IDD Module includes a set of indicators to support actors to identify progress and gaps in the inclusion of people with IDD and their caregivers within a health system.

If you are interested in applying the IDD module, please reach out to info@themissingbillion.org, with the heading “SLA IDD module”. We will provide you with the requisite tools and support.

Download the IDD module overview
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