Nick Corby,2 Sanu Khimbaja3 and Liz Ewen4
Abstract All people with disabilities should expect equitable access to services and equal opportunities; the UN Convention on the Rights of Persons with Disabilities explicitly recognises the importance of their full and effective participation and inclusion in society. However, particularly in low-income countries, people with disabilities with high support needs compared to other people with disabilities do not always benefit equally from existing policies, development projects, services, or practices. This article reflects on learning gathered from across the Disability Inclusive Development Inclusive Futures programme. It asserts that strengthening inclusion of people with disabilities with high support needs requires not only practical know-how at project level, but also systemic change to funding practices and project design. We identify key areas where collective focus and systemic change would ensure development programmes more commonly include people with disabilities with high support needs, who are often the hardest to reach and the most marginalised and excluded.
Keywords: disability, inclusion, equitable access, support needs, systemic change, development programmes, marginalised, participation, Inclusive Futures.
Disability rights have been placed at the heart of global development and humanitarian action by the UN Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals; both national strategies and international cooperation are expected to help strengthen disability justice and inclusion (UN 2020, 2006).5 Yet a growing body of evidence demonstrates that people with disabilities are being left behind (UN 2024). People with disabilities continue to die earlier (up to 20 years earlier than people without disabilities) (WHO 2022a). People with disabilities also face persistent barriers that exclude them from equally benefiting from and participating in society; for example, children with disabilities are more likely to be out of school than children without disabilities (UNICEF 2022).
Home-based learning support initiated by mobile teacher
Photo credit National Federation of the Deaf Nepal
People with disabilities are not one homogenous group – the interaction of health conditions, personal factors, and environmental factors can greatly vary individual experiences. Intersecting identities (e.g. based on age, gender, faith, ethnicity, caste, class, or sexual orientation) also create differing power dynamics that impact on lives. While disability correlates with disadvantage, not all people with disabilities are equally disadvantaged; some groups have traditionally been more excluded, harder to reach, or subject to higher barriers to participation. People with disabilities with high support needs (see Section 4.1 for a discussion around the definition of ‘high support needs’) commonly experience higher barriers to inclusion and participation than other people with disabilities. People with deafblindness (who represent between 0.2 per cent and 2 per cent of the global population) are more likely to be poor, unemployed, and have low education outcomes (WFDB 2018). People with intellectual disabilities are more likely to live in environments and have lifestyle factors that put their health at risk (WHO 2022b). Children with psychosocial disabilities and children with intellectual disabilities are victimised more often than other children with disabilities across almost all types of violence and perpetrator (except for sexual violence and peer bullying) (Fang et al. 2022). Global development goals and targets will not be achieved unless there is a focus on all people with disabilities, especially those with high support needs; only 5 per cent of Sustainable Development Goal targets are currently on track for people with disabilities (UN 2024).
Recent work completed under the Disability Inclusive Development Inclusive Futures (hereafter Inclusive Futures) programme gathered learning regarding the inclusion of people with disabilities with high support needs (Inclusive Futures 2025). The programme recognised there is often a lack of understanding, know-how, and data that results in people with disabilities with high support needs being overlooked and omitted from development projects. The resulting learning paper provided practical insights intended to help donors, government and non‑government actors, and Organisations of Persons with Disabilities (OPDs) to strengthen project-level consideration and inclusion of people with disabilities with high support needs in development programmes (ibid.).
In this article, we move beyond practical lessons presented in the learning paper to discuss the broader implications of the learning gathered from across the Inclusive Futures programme regarding the inclusion of people with disabilities with high support needs. While the learning paper was developed to provide key insights of practical relevance, we assert that the learning also points to systemic changes required in funding practices and project design, which will enable development programmes to include people with disabilities with high support needs from their outset.
In this section, to show how people with disabilities with high support needs can be included in development interventions, we summarise selected findings presented in the learning paper (ibid.) and reflect on the lessons learned.
One person consulted during the development of the learning paper, who has disabilities and is a self-advocate, underscored that all people with disabilities have some support needs, but some have higher support needs than others. While the learning paper utilised the term ‘people with complex disabilities’ to refer to people with high support needs, there is no agreed definition for either term in the CRPD or disability-related literature. In the absence of an agreed definition with which to identify people with high support needs (who are more likely to be left behind), the Inclusive Futures programme found it helpful to identify a cohort of people with disabilities deemed most likely to have high support needs. Namely, these were people with: specific impairments (in particular, deafblindness or cerebral palsy); multiple impairments; or severe functional limitations (e.g. ‘cannot do at all’) in more than one domain using the Washington Group Questions.6 Individual projects under the Inclusive Futures programme worked closely with OPDs to help set the criteria and subsequently identify people with disabilities that met the agreed criteria.
People with disabilities with high support needs more often than other people with disabilities require direct, one-to-one assistance to equally benefit from existing policies, services, or practices (accommodations aligned with principles in the CRPD). One Inclusive Futures project provided one-to-one school-based learning support to provide tailored teaching to students with disabilities with high support needs who were enrolled in local mainstream schools. Inclusive Futures projects found that direct one-to-one assistance helped to reinforce skills building and allowed for the ongoing review of each individual’s skillset; the knowledge and understanding of people with disabilities with high support needs could be supplemented at a pace that suited the individual, ensuring they had equal opportunity to learn.
Direct, one-to-one assistance requires specialised services and resources, including: individualised education plans; accessible teaching and learning materials; sign language and/ or augmentative and alternative communication; and assistive devices and technologies.
Inclusive Futures projects also found it important to directly engage the families, caregivers, and personal assistants of people with disabilities with high support needs. They equipped them with skills (including vocational skills, basic therapy, and advocacy-related training) to directly support people with disabilities with high support needs, or provided household-level support (e.g. livelihood support or links to relevant OPDs/ networks) to build resilience, strengthen household capacity, and help reduce social isolation. Inclusive Futures projects found that this engagement: (a) enabled families, caregivers, and personal assistants to work alongside the person with disabilities with high support needs and/or undertake tasks that they could not master; (b) helped tackle household-level attitudinal barriers (families and caregivers can have low expectations of children with disabilities with high support needs, and can be ‘overprotective’ and/or worried about community-level stigma and discrimination), facilitating ongoing access to services for people with disabilities with high support needs; (c) helped families and caregivers to reinforce and support their child’s learning progression, between home-based education visits or outside of school hours; and (d) strengthened community-level advocacy initiatives by fostering greater community awareness.
Inclusive Futures projects identified that to successfully engage families and caregivers of children with disabilities with high support needs in project activities, it was important to cover associated costs (such as travel expenses and lost salary) and to support income‑generating activities, or to link families and caregivers to existing social protection mechanisms. Financial barriers often prevent families and caregivers of children with disabilities with high support needs from participating in project activities.
Inclusive Futures projects found it important to simply provide more time for people with disabilities with high support needs to learn. They provided additional training for people with disabilities with high support needs so that their total time spent learning new skills or knowledge was more than that of other people with disabilities or people without disabilities. They also broke down learning into smaller tasks for people with disabilities with high support needs.
Inclusive Futures projects indicate that projects designed to be flexible, offering a range of project pathways (e.g. educational or vocational pathways) that can be tailored to each individual and their family circumstances, are more effective than narrow, sector-focused projects (e.g. projects focused on increasing attendance in mainstream schools only). For instance, people with disabilities with high support needs may benefit from training to prepare them for enrolment in mainstream schools, but their circumstances (e.g. if they are identified at an age that is post‑primary education) or learning outcomes may prove they will benefit more from vocational skills training.
The project resources available or donor priorities can restrict project scope, but all projects can establish strong referral networks to tailor project pathways to each individual and to help provide equal access to opportunities during and after projects. For example, they can help people with disabilities with high support needs transition from one focus area to another, which may be deemed more suited to their skillset. Or they can help people with disabilities with high support needs or their families obtain further support from various government and non-government initiatives in the same geographical area that facilitates and complements project activities (e.g. income generation).
Inclusive Futures projects demonstrated that people with disabilities with high support needs experience higher levels of discrimination than other people with disabilities, emphasising the importance of behaviour change campaigns to strengthen equity. An Inclusive Futures project in Kenya, for example, expanded training provided to micro-entrepreneurs with disabilities with high support needs and increased community sensitisation activities to mitigate strong and persistent stigma and discrimination that forced some micro-entrepreneurs to sell goods at a lower price than their competitors to attract customers.
Inclusive Futures projects also found that directly engaging and employing people with disabilities with high support needs in community-facing project activities (e.g. in delivering training, mentoring, or providing one-to-one support to other people with disabilities with high support needs and their families) positively impacted project outcomes. In particular, this approach provided a strong champion for people with disabilities with high support needs, inspired other people with disabilities with high support needs, demonstrated what inclusion of people with disabilities with high support needs looks like, and provided a riposte to stigma and discrimination.
Based on the experience of the Inclusive Futures programme, we argue that including people with disabilities with high support needs requires projects to create an enabling environment. This includes tailoring activities, strengthening the support network around people with disabilities with high support needs, and/or providing additional specialist services (e.g. tactile sign language for people who are deafblind). With the right approach and deliberate consideration, people with disabilities with high support needs can be included in development projects. More detailed consideration of project-level actions that can be taken to strengthen the inclusion of people with disabilities with high support needs is available in the separate learning paper (Inclusive Futures 2025).
It is critical to further build the confidence and know-how of implementing agencies to include people with disabilities with high support needs in development projects. The first global report on the situation of people with deafblindness, for example, recognised that ‘because deafblindness is less well-known and often misunderstood… people [with deafblindness] are often excluded from both development and disability programmes’ and that the ‘relative invisibility of persons with deafblindness is both a cause and a consequence of a lack of understanding across disability rights and development stakeholders, both in terms of the extent and diversity of their issues, as well as their specific inclusion requirements’ (WFDB 2018: iii and 3).
The lessons learned through the Inclusive Futures programme point to the need for systemic change in some funding practices and project design, which would help development programmes to routinely consider people with disabilities with high support needs.
The experience of Inclusive Futures projects indicates the need for an agreed definition of ‘high support needs’, and based on this definition a common approach for identifying people with disabilities with high support needs.
Inclusive Futures projects did not use a shared definition of ‘high support needs’. Instead, as detailed above, different proxy measures were used to identify initial cohorts of people with disabilities that project staff and external partners (including OPDs) deemed likely to have high support needs. These were either impairment-focused measures and/or measures focused more on functional limitations. The proxy measures took no account of the support structures already in place for each individual and to what extent their support needs were ‘high’ (e.g. whether support needs were unmet or less able to be met in the local context, whether the cost of support needs were high compared to household income, or whether the support needs were broad in scope). All identified individuals were deemed to have equally high support needs, whereas in reality individual support needs vary based upon the severity of the impairment(s), the local context, and personal circumstances. Not all people with cerebral palsy, for example, have high support needs.
Inclusive Futures projects went on to assess the support needs of each individual following their initial selection to help tailor project activities effectively and ensure equal opportunity, but without using any shared approach to identify high support needs.
The lack of both an agreed definition of high support needs and a common approach for identifying people with disabilities with high support needs is not an abstract issue; it has an impact at project level. Without set criteria for identifying high support needs, there is ambiguity about the types of individuals targeted by project activities and it is challenging to compare project inputs and/or outcomes across project cohorts. In turn, this affects the value of impact evaluations and operational research, which undermines the evidence base used to ensure equity for people with disabilities with high support needs. Defining ‘high support needs’ could also provide clarity on the types of support commonly provided to people with disabilities with high support needs, enabling implementing organisations and project staff to pre-approve potential providers and associated costs. Inclusive Futures project staff reported difficulties getting in place the correct mix of staff knowledge and capacity and setting project budgets, because of uncertainty around the types of support that might be required (and the likely demand for the different types of support) (Inclusive Futures 2025).
Having no agreed definition of ‘high support needs’ or common approach for identifying people with disabilities with high support needs also has an impact at societal level. People with disabilities with high support needs are often absent from official government data; this absence is not unique insofar as disability disaggregated data has often been inadvertently or purposefully excluded from official data for complex and varied reasons (including weak civil registration systems, exclusionary survey methodologies, and community-level stigma) (Bond and IDDC 2025). As a result, however, inequities and disparities facing people with disabilities with high support needs are hidden, meaning their needs and experiences are omitted from government decision-making (in turn reinforcing their invisibility and exacerbating their social isolation).
Defining ‘high support needs’ and developing a shared approach for identifying people with disabilities with high support needs could: (a) significantly strengthen future project planning, implementation, and learning; (b) improve understanding of inequities experienced by people with disabilities with high support needs; and (c) provide clarity on the types of support typically required by people with disabilities with high support needs.
The experience of Inclusive Futures projects underscores the importance of ensuring that funding organisations consider groups like people with disabilities with high support needs – those that are among the hardest to reach, the most marginalised and excluded, and that require additional resources – in their approach to value for money.
The development sector is currently experiencing significant cuts in funding. For example, by 2027 the UK will have cut Official Development Assistance by around 40 per cent (Miolene 2025). However, it is important to guard against the false dichotomy that presents value for money and disability inclusion as being at odds (Barrell and Sidell 2025). Excluding people with disabilities with high support needs is not effective programming; instead, programming that excludes some people is ‘inherently flawed, perpetuates poverty and places a heavier financial burden on families and public systems – deepening inequality and proving more costly to the wider economy in the long term’ (ibid.).
For project activities to include people with disabilities with high support needs, projects require adequate budget. Assessing individual support needs and tailoring project activities and/or providing additional specialist services has cost implications, in terms of time spent and the cost of adaptations or the specialist services. Inclusive Futures projects found that the number of people with disabilities with high support needs included in projects is often low, because there are small numbers of such individuals in the location(s) covered by the development project(s) (Inclusive Futures 2025). As a result, there are not necessarily economies of scale available for specific adaptations or the provision of specialised services.
Approaches to value for money exist that encourage a focus on equity, assessing how fairly project benefits are distributed and the extent to which benefits will reach poor and marginalised groups. The UK Foreign, Commonwealth & Development Office (FCDO)’s guidance, for example, encourages considering equity in a way that is proportionate to the scale and risk of the programme, and on the basis of the available evidence. FCDO’s guidance suggests that the appraisal of equity should consider what will happen if groups are not reached (including whether they may be further marginalised or experience increased social or economic inequalities) (DFID 2019). Given the relative invisibility of people with disabilities with high support needs (see Section 4.1), we argue that more effort is required to evidence both the impact of including people with disabilities with high support needs and what happens when they aren’t reached, as well as how including them is proportionate to the scale and risk of most development programmes.
The experience of Inclusive Futures projects also highlights the value of policy-level interventions to ensure normative frameworks explicitly reference people with disabilities with high support needs.
Legal frameworks and policies protecting the rights of people with disabilities are often already in place, which in principle extend to people with disabilities with high support needs. Pan‑disability legislation and policies provided a strong foundation for Inclusive Futures projects to ensure policies, services, and/or practices of broader relevance (to all people with disabilities as well as people without disabilities) equally benefited people with disabilities with high support needs. However, without explicit mention in legislation or government policies of the additional support required by people with disabilities with high support needs, Inclusive Futures projects often found it difficult to ensure government departments routinely provided or funded specific adaptations or specialist services (Inclusive Futures 2025).
Inclusive Futures projects found that collaborating with governments to develop or revise policies to explicitly include provisions referencing people with disabilities with high support needs had a positive impact (ibid.) This ensured, for example, that government budgeting or action plans readily considered people with disabilities with high support needs. For instance, Inclusive Futures projects in Nepal collaborated with local municipalities to ensure that inclusive education standards now include provisions for supporting children with disabilities with high support needs.
Explicit mention of people with disabilities with high support needs in legislation and government policies helps to create an enabling environment. Securing policy commitments targeting people with disabilities with high support needs will require not only advocacy, but also evidence of the positive impact of any policy decision on people with disabilities with high support needs and implications on public spending. A clear definition of ‘high support needs’ and robust operational research remains critical, as discussed above in Section 4.1.
Lessons learned from the Inclusive Futures programme provide practical insights intended to help strengthen project-level consideration and inclusion of people with disabilities with high support needs. The lessons learned provide a starting point, but more evidence is needed regarding how to include people with disabilities with high support needs in development projects, and the impact when this is achieved. Investment in any research, however, requires clearer direction. It is important that a research agenda focusing on people with disabilities with high support needs is broadly agreed by people working on disability-inclusive development (including OPDs). This research agenda would need to define research priorities that are aligned with the experiences of people with disabilities with high support needs. An agreed research agenda would help identify opportunities to leverage existing interventions and optimise budgeting and resource allocation. The resulting research would help ensure more effective, scalable, and cost-efficient interventions for the inclusion of people with disabilities with high support needs.
With the right approach and deliberate consideration, people with disabilities with high support needs can be and should be routinely included in development projects; in turn, project outcomes and disability inclusion can be more equitable.
Lessons learned from across Inclusive Futures projects emphasise the importance of tailoring project activities, strengthening the support network around people with disabilities with high support needs, and/or providing additional specialist services. Reducing social isolation of people with disabilities and their families is critical; directly engaging people with disabilities with high support needs (and their representative organisations) helps strengthen their inclusion and also helps address attitudinal barriers and strengthen project activities.
Learning from Inclusive Futures projects underscores that challenges persist at both project level and broader systems level, which hinder the inclusion of people with disabilities with high support needs in development projects. These challenges include: (a) sparse project-level know-how and confidence around working with people with disabilities with high support needs; (b) persistent evidence and data gaps; (c) no standard definition of ‘high support needs’; and (d) approaches to value for money that may still marginalise people with disabilities with high support needs. By grounding development programmes in human rights standards and adopting a systemic, equity-centred approach to funding and project design, development projects could move beyond the occasional inclusion of people with disabilities with high support needs toward a sustained focus on all people with disabilities – ensuring no one is left behind in the pursuit of inclusive development.
The following are recommendations for different stakeholders. We believe achieving these will help transform the inclusion of people with disabilities with high support needs in development projects:
For academics and research institutes:
For grant-making organisations:
For global international development actors:
1 This issue of the IDS Bulletin was supported by UK aid under its flagship Disability Inclusive Development (DID) programme. The DID programme was delivered through two separate programmes. The eight-year consortium intervention, Disability Inclusive Development Inclusive Futures (Inclusive Futures) programme, led by Sightsavers and the International Disability Alliance, ran from August 2018 to March 2026. It has reached more than 19 million people and generated almost 300 learning and evidence resources to inform policy and practice on disability-inclusive development. The evaluation programme, the Programme for Evidence to Inform Disability Action (PENDA), was delivered by the London School of Hygiene & Tropical Medicine. The opinions expressed are the authors’ own and do not reflect the views of the funders.
2 Nick Corby, Director, Impel Consultancy.
3 Sanu Khimbaja, Project Manager, National Federation of the Deaf Nepal.
4 Liz Ewen, Head of Impact and Influencing, Sense International.
5 See Article 3 and Article 4 of the UN Convention on the Rights of Persons with Disabilities (UN 2006).
6 See Washington Group Question Sets on Disability.
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© 2026 The Authors. IDS Bulletin © Institute of Development Studies | DOI: 10.19088/1968-2026.160 This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International licence (CC BY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original authors and source are credited and any modifications or adaptations are indicated.
The IDS Bulletin is published by Institute of Development Studies, Library Road, Brighton, BN1 9RE, UK. This article is part of IDS Bulletin Vol. 57 No. 1 March 2026 ‘Building Disability-Inclusive Futures’; the Introduction is also recommended reading.