Facilitate the Inclusion of Persons with Disabilities in Family Planning Programming: A Strategic Planning Guide
This document is intended to guide program managers, planners, and decision-makers through a strategic process to facilitate the inclusion of persons with disabilities in family planning programming. It was developed through consultation and discussion with organizations of persons with disabilities (OPDs), service providers, and technical experts in inclusion, family planning, and sexual and reproductive health and rights (SRHR).
Throughout the key actions below, programmatic responses should address the diversity of persons with disabilities who are not a homogeneous group and experience diverse kinds of disabilities—some of them invisible or not always apparent.
More than a billion people in the world experience disability,2 corresponding to about 15% of the world’s population. One in five women are women with disabilities. Persons with disabilities are being “left behind” in the global community’s work on health, including SRHR.3 A Guttmacher–Lancet Commission report highlights that persons with disabilities are an “underserved population subjected to harmful stereotypes and myths […]. They are much more likely to be victims of physical and sexual abuse and rape […]. They are also more likely to be subjected to forced or coerced procedures, such as sterilization, abortion, and contraception. Inadequate information and a paucity of targeted resources contribute to this group’s vulnerability.”4 These disadvantages begin early in life and continue in adulthood.5
Persons with disabilities include “those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others”, as stated in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), Article 1.1
Key actions for disability inclusion in family planning programming
The key principles of disability inclusion derived from the CRPD are accessibility, participation, and nondiscrimination.1 A program or service is disability inclusive when persons with disabilities in all their diversity can meaningfully participate and have their needs met and their rights respected and fulfilled.
To ensure family planning programs are meaningful and impactful for persons with disabilities, disability inclusion should be considered at all stages of planning and preparation. If an inclusion perspective is not incorporated at the very beginning of the program design process, disability inclusion often becomes an “afterthought” during implementation and inevitably results in a lack of adequate stakeholders’ engagement and resource allocation. Inclusive family planning programming should always align with the rights-based Principles Underpinning High Impact Practices for Family Planning, including equity, which relates to identifying and addressing barriers to health-seeking behavior, voluntary contraceptive use, and making programmatic adjustments to overcome disparities.6 The inclusion of persons with disabilities and their representative organizations is essential to equity and to build stronger family planning programs.
The following key actions facilitate the inclusion of persons with disabilities in family planning programming.
Key action 1: Collect information on disability and SRHR, incorporate existing data, and understand the policy environment in the countries/communities of implementation.
To effectively meet family planning needs and promote the rights of all persons with disabilities, in addition to conducting proper planning to ensure multisectoral and inclusive cooperation, family planning stakeholders must collect key information.
- Map OPDs and collect information on their experience in the field of SRHR and family planning. Include women-led and youth-led OPDs and organizations of parents of children with disabilities.
- Gather and analyze existing disability-disaggregated data on family planning and SRHR; identify gaps in data availability and inclusive SRHR information and services provision.
- Map relevant policies, ascertain their implementation, and note if they are discriminatory against, inclusive of, or silent on persons with disabilities. In consultation with OPDs, identify which policies need to be changed or adapted.
Key action 2: Ensure participation, develop meaningful cooperation, and build partnership with persons with disabilities and their representative organizations.
Partnership and cooperation with OPDs must be intentional from the design phase of the project. Their expertise in identifying and addressing barriers preventing persons with disabilities to access SRHR information and services is essential in each phase of the project, and it is key to ensure the “do no harm” and “nothing about us without us” principles are fully translated into practice.
OPDs (also referred to as “Disabled Persons’ Organizations” or “DPOs”) are organizations led, directed, and governed by persons with disabilities. OPDs are committed to empowerment of persons with disabilities and respect and recognition of their rights. They all offer essential resources and support to persons with disabilities, some of them specifically to women, girls, and youth with disabilities. Many engage in advocacy and awareness-raising.
- Ensure OPDs’ meaningful involvement in each stage of the project and in the decision-making process with planned budgeting for and provision of accessible information and communication (e.g., braille, large print, plain language, sign language interpretation, captioning), as well as accessible in-person meeting venues and virtual platforms. Compensate their participation and proactively pay for, or if necessary, reimburse costs associated with their participation (e.g., accessible transportation, support person).
- Jointly explore the objectives of the program and identify the areas of potential partnership (e.g., in SRHR outreach and community mobilization, training for health workers, advocacy).
- Consider OPDs’ knowledge and strengths in SRHR and discuss their needs with regard to capacity strengthening.
- When there is no functioning OPD where program activities will take place, reach out to national/regional level OPDs for advice and liaise with local community leaders to facilitate the identification of persons with disabilities in the area.
Key action 3: Identify and address key barriers and facilitators to access and uptake of quality family planning information and services among persons with disabilities and fulfillment of their SRHR.
Women with disabilities are often excluded from family planning information and services in the community and at the health facility level due to barriers related to intersecting factors including disability, age, and gender.4,7 To provide inclusive family planning information and services, the identification and understanding of barriers and facilitators is key and should be carried out in collaboration with OPDs. Barriers and facilitators can be classified into the four main areas indicated below in synthesis and more extensively in the guideline Sexual and Reproductive Health and Rights for All: Disability Inclusion from Theory to Practice (section 1.3.1).8
|Examples of attitudinal barriers||Examples of attitudinal facilitators|
|Discrimination and stigma against persons with disabilities. They commonly stem from myths and misconceptions about sexuality and disability including, for example, that they are either asexual or hypersexual, and that they are unable to take autonomous decisions about their SRH.||Training for all health workers on disability inclusion and the rights of persons with disabilities, including the right to informed consent.|
|Examples of physical/environmental barriers||Examples of facilitators|
|Health facility infrastructure is not accessible (e.g., steps, narrow entrances, inaccessible toilets) and public transportation is not accessible or very expensive and health care facilities are too far for persons with disabilities.||Facilities are regularly monitored for accessibility and the budget allows for infrastructural modifications and accessibility.
Outreach activities, home visits, digital health services, and self-care approaches to SRHR are available and accessible.
|Examples of communication/information barriers||Examples of communication/information facilitators|
|Lack of accessible information about family planning services and of reasonable accommodations during health care service delivery (e.g., sign language interpreters, communication aids, and support in decision-making).||Information is available in accessible formats (braille, audio format, easy-to-read, visual prompts) and health service providers and family planning programs reserve resources for accommodations for persons with disabilities as needed.|
|Examples of institutional and policy barriers||Examples of institutional and policy facilitators|
|SRHR-related policies and strategies do not promote inclusion or discriminate against persons with disabilities. Service providers do not have adequate training or understanding of disability inclusion.||Laws and policies are aligned with the CRPD and other relevant international standards and are regularly implemented.
National training curricula for health workers include a module on disability inclusion.
Once barriers are identified, national decision-makers, family planning program administrators and relevant civil society organizations need to address them using the “twin-track approach” which entails calling for:
- Integrating disability-inclusive measures into the planning, design, implementation, and monitoring and evaluation of all SRHR policies and programs, or “mainstreaming”; and
- Implementing disability-specific programming or initiatives to meet the specific needs and support the empowerment of persons with disabilities.
Key action 4: Apply disability-inclusive budgeting and its key principles.
Planning and budgeting of inclusive SRHR programs need to involve persons with disabilities and OPDs, estimate realistic costs, and address needs reflected by the disability-disaggregated data and the barrier assessments. It is key to set indicators to monitor the allocation and use of budget for inclusion and that the key steps to create equitable access to high-quality family planning information and services9 are integrated in the project.
Plan and budget for service delivery that is accessible for and inclusive of persons with disabilities, considering the following examples of budget items:
- Modification of health facility infrastructure (e.g., accessible toilets, ramps).
- Conducting inclusive home visits and outreach (e.g., to OPDs’ meeting venues, teleservice, mobile clinics, reasonable accommodation costs).
- Accessible and inclusive information, education, and communication and social and behavior change communication material (e.g., different formats, audio and visual material, braille).
- Training of health workers and other relevant staff on human rights, disability inclusion, health equity, and universal health care, and recruitment, training, and inclusion of persons with disabilities as health service providers or community volunteers, including costs for reasonable accommodations, transport, and assistive and digital technology for persons with sensory disabilities (e.g., blind, low vision, deaf).
Key action 5: Put in place monitoring, evaluation, and learning (MEL) mechanisms to collect data on the access of persons with disabilities to quality SRHR information and services.
There is a critical evidence gap regarding the inclusion of persons with disabilities in all health programs, including family planning. This can leave policymakers and service providers without the adequate information for decision-making about services and resource allocation. Legal frameworks, including the CRPD, request country governments to collect appropriate information, including statistical and research data, and utilize disaggregation of data to enable the formulation and implementation of appropriate policies. Health service providers can document disability data using tools such as The Washington Group Questions Short Set (WG-SS),10 an internationally recognized tool used to identify the prevalence of disability.
- Collect SRHR data disaggregated by disability, age, and gender as part of routine data collection and monitoring systems and include disability-inclusive indicators (examples in the box below).
- Sensitize and train relevant health stakeholders, government staff, and service providers on the importance and use of data collection tools such as the WG-SS, the Demographic and Health Surveys Disability Module,11 and the inclusion of persons with disabilities into feedback mechanisms to improve quality of services and accountability for the CRPD, the Universal Health Coverage political declaration, and the World Health Assembly resolution on The Highest Attainable Standard of Health for Persons with Disabilities.12
- Ensure informed consent, confidentiality, privacy, and respect during data collection processes to ensure “do no harm” and protection of personal information.
- Percentage of women of reproductive age with disabilities accessing health care and SRH-related services
- Number of SRH service delivery points that have physical accessibility adaptations in place
- Number of SRH service delivery points that have information and communication accessibility adaptations in place
- Percentage of health staff trained (both initial and continuous training) on inclusive SRHR
- United Nations (UN). Convention on the Rights of Persons with Disabilities. UN; 2006. Accessed February 20, 2023. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html
- World Health Organization (WHO), The World Bank. (2011). World Report on Disability. WHO; 2011. Accessed February 20, 2023. https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/world-report-on-disability
- Kuper H, Heydt P. The Missing Billion: Access to Health Services for one Billion People with Disabilities. Missing Billion; 2019. Accessed February 20, 2023. https://static1.squarespace.com/static/5d79d3afbc2a705c96c5d2e5/t/5f284cb69af8a9396df3f81c/1596476607957/v3_TheMissingBillion_revised_0620.pdf
- Starrs AM, Ezeh AC, Barker G, et al. Accelerate progress-sexual and reproductive health and rights for all: report of the Guttmacher-Lancet Commission. Lancet. 2018;391(10140):2642–2692. https://doi.org/1016/S0140-6736(18)30293-9
- United Nations Population Fund (UNFPA). Young Persons with Disabilities: Global Study on Ending Gender-Based Violence and Realising Sexual and Reproductive Health and Rights. UNFPA; 2018. Accessed February 20, 2023. https://www.unfpa.org/publications/young-persons-disabilities
- Principles underpinning high impact practices (HIPs) for family planning. High Impact Practices in Family Planning. Accessed February 20, 2023. http://www.fphighimpactpractices.org/principles-underpinning-high-impact-practices-hips-for-family-planning/
- Humanity & Inclusion. Access to Sexual and Reproductive Health and Rights Information and Services: Perspectives of Women and Girls with Disabilities in Uganda and Bangladesh. Humanity & Inclusion; 2021. Accessed February 20, 2023. https://assets.nationbuilder.com/handicapinternational/pages/3998/attachments/original/1656685225/1._FINAL_HI_report_research_2022.pdf?1656685225
- Berger G, Aresu A, Newnham J. Sexual and Reproductive Health and Rights for All: Disability Inclusion from Theory to Practice. Women’s Integrated Sexual Health 2 Action Project. Humanity & Inclusion; 2022. Accessed February 20, 2023. https://assets.nationbuilder.com/handicapinternational/pages/3998/attachments/original/1656685227/2._FINAL_HI_iSRHR_Guidelines_P4_digital.pdf?1656685227
- High Impact Practices in Family Planning (HIP). Creating Equitable Access to High-Quality Family Planning Information and Services: A Strategic Planning Guide. HIP Partnership; 2021. Accessed February 20, 2023. fphighimpactpractices.org/guides/creating-equitable-access-to-high-quality-family-planning-information-and-services
- Washington Group on Disability Statistics. The Washington Group Short Set on Functioning (WG-SS). Washington Group on Disability Statistics; 2020. Accessed February 20, 2023. https://www.washingtongroup-disability.com/fileadmin/uploads/wg/Documents/Questions/Washington_Group_Questionnaire__1_-_WG_Short_Set_on_Functioning.pdf
- Collaboration yields new disability questionnaire module. Press release. The DHS Program; December 2, 2016. Accessed February 20, 2023. https://dhsprogram.com/Who-We-Are/News-Room/Collaboration-yields-new-disability-questionnaire-module.cfm
- The Highest Attainable Standard of Health for Persons with Disabilities, Resolution EB148.R6, World Health Assembly 74th Session (2021). Accessed February 20, 2023. https://apps.who.int/gb/ebwha/pdf_files/EB148/B148_R6-en.pdf
This document was originally drafted by Alessandra Aresu, Jane Newnham, and Rosanne Rushing. Its content was developed through consultation and discussion with organizations of persons with disabilities (OPDs) including Jane Kihungi, Women Challenged to Challenge (Kenya); Badiul Alam, Protibondhi Baykti Unnoyon Somity (Bangladesh); Rebeka Akter, Bogura Zila Spandon Protibandhi Nari Parisodh (Bangladesh); Zekia Musa Ahmed, South Sudan Women with Disabilities Network; Victor Adis, South Sudan Organisation of Persons with Disabilities and Yei Disable Action Group. In addition, the following individuals provided critical review and helpful comments: Maria Carrasco, Chukwuemeka Nwachukwu, Ados May, Laura Raney, Megan Gomes, Katherine Guernsey, Diana Carolina Moreno, Jahid Khan, Govinda Dhungana, Esther Namulinda, Kerry MacQuarrie, Natalie Apcar, Carey Walovich, Virpi Mesiäislehto, and Laura Ximena León Orjuela.