Following the publication of new CIP research on unmet care needs among adults with disabilities in Bogota, Colombia, we spoke with its authors, CIP Research Associates María Antonella Pereira and Monica Pinilla-Roncancio, about the research process and what their findings mean for more inclusive care and support systems.
Published in MDPI, the study draws on primary data collected from 1,001 adults with disabilities in early 2025. It finds that a substantial proportion have unmet care needs, either because the care they receive is insufficient or because they need care but do not receive it. It also documents a less widely discussed reality: many adults with disabilities provide care to other members of their household.
The researchers deliberately collected individual-level data on care directly from adults with disabilities. This is the first study in Colombia and, to their knowledge, in low- and middle-income countries to use primary data to analyse the proportion of adults with disabilities with unmet care needs. It also highlights the lack of recognition of people with disabilities as caregivers and finds that only a small percentage receive support from the Local Care System. By distinguishing different care situations and documenting both receiving and providing care, the study offers evidence to inform more inclusive approaches to care.
In the interview below, Pereira and Pinilla-Roncancio discuss what motivated these methodological choices, what became visible by listening directly to adults with disabilities, and how the findings challenge conventional understandings of care, disability, and support.
Why is it relevant to talk about people with disabilities’ unmet care needs?
Maria: Traditional research on care relies heavily on care and time use surveys. This body of knowledge has allowed us to understand clearly the disproportionate responsibility of care that falls on women and girls, and the implications of this on their well-being. Existing research has focused primarily on caregivers and on identifying the barriers they face to social and economic participation, and usually these sources of information do not collect data on disability or ask questions regarding time use for people with disabilities. This may reveal an underlying assumption that people with disabilities do not provide care and are necessarily “dependent” on others. Research on people with disabilities and their care needs is thus highly relevant.
Monica: Yes, I agree. Maria, as you say, this corpus of research is limited given that it has largely ignored those needing and receiving care. Indeed, care and time use surveys do not inquire about care needs and whether they are met from the point of view of the person receiving care. The needs of care and support of people with disabilities become evident when data is collected such as we did in this research project. This type of research is relevant to argue that care policies and programs are necessary not only to reduce and redistribute unpaid care responsibilities, but also to address unmet care needs of persons requiring care, even if they are already receiving support at home. And this is not an insignificant share of the population. For instance, in this study, we identified that 58.7% of people with disabilities in Bogota received care but reported needing more, and 7.6% did not receive care but reported needing it (Pinilla-Roncacio & Pereira, 2026). Thus, 66.3% of people with disabilities reported that they had unsatisfied care needs, of which the majority already received some care (Pinilla-Roncacio & Pereira, 2026).
Maria: Measuring care needs also helps us learn about the type and extent of these needs, allowing for the design of tailored policy responses. For instance, among respondents who received care at home but had unmet needs, the most common activities where more care and support were needed included communicating with others, toileting, and attending doctor appointments (Pinilla-Roncacio & Pereira, 2026). Knowing this can help in the design of public policy, for instance, by ensuring that public care and support programs include training for personal assistants or caregivers on facilitating communication or respecting will and preferences.
Why is it important to survey adults with disabilities compared to relying on caregiver-reported data?
Monica: The perspectives of people giving and receiving care and support are both important to understand care relations and their socioeconomic impacts on people’s lives, especially concerning persons with disabilities. There is an outdated misconception that people with disabilities can not participate in data collection efforts. With appropriate reasonable accommodations and accessibility considerations in place, people with disabilities can and should participate in research.
By excluding them, particularly in topics that overwhelmingly impact the disability community, results will necessarily only present one side of the story. Relying exclusively on caregiver-reported data or time use surveys and associated research leads to care policy discussions that will necessarily fail to account for the realities of people with disabilities. We hope that this research and future initiatives help reveal the limitations of relying solely on caregiver-centered data, and in turn can help inform the development of more comprehensive data collection efforts. For instance, it would be ideal to modify care or time use surveys to include questions targeted at persons receiving care within the household, including people with disabilities. This is also why we made a sample of the questionnaire available upon request.
How does capturing both receiving and providing care alter conventional understandings of care dynamics?
Maria: People with disabilities are stereotypically thought of as requiring and receiving care, but not as providers of care and support. This is often grounded in antiquated notions that people with disabilities are passive recipients of care who cannot actively participate in society, including by supporting their families. Demystifying these types of stereotypes is key to ensuring that policy design is grounded in evidence and not assumptions. Indeed, as shown in this article, people with disabilities can be both caregivers and care recipients. When adults with disabilities are caregivers, they have specific characteristics. Based on the results of this study, caregivers with disabilities are more likely to be younger, female, more highly educated, and to be working relative to adults with disabilities who do not provide care (Pinilla-Roncacio & Pereira, 2026). So, not only do people with disabilities provide care, but they also study and work, breaking the myth that people with disabilities can not participate in society. The challenge for public policy is to support people with disabilities in participating on an equal basis with others, in the case of caregivers with disabilities, support them in providing care but also in participation in education, employment, and other spaces that we all partake in.
How can findings from this study help inform inclusive care policy design in Colombia and in other regions?
Monica: The study’s findings can inform care policy design in Colombia and other regions by highlighting gaps in current service provision. For instance, the study found that adults with disabilities cared for by someone outside their household were more likely to report unsatisfied care needs than those receiving care from someone in their household (Pinilla-Roncacio & Pereira, 2026). This may suggest that non-cohabiting caregivers may face competing responsibilities that limit the quality or continuity of care, such as also being hired to perform household chores or care for more than one person in the household (Pinilla-Roncacio & Pereira, 2026). In Bogota, there have been two pilot personal assistance programs implemented as part of the local care system. While these pilots have been found to improve autonomy, their high costs indicate the need for complementary, more scalable strategies, particularly for individuals relying on non-family caregivers who are more likely to have unmet care needs based on the results of this study.
On the other hand, the absence of services within Bogota’s care system tailored to caregivers with disabilities and the low uptake of existing municipal care services among persons with disabilities, as shown in this study, point to significant shortcomings in outreach and inclusion (Pinilla-Roncacio & Pereira, 2026). Expanding access, adapting services to diverse types of disabilities and levels of support needs, and explicitly recognizing caregivers with disabilities in care and disability policies could improve care outcomes and promote more equitable participation for both people with disabilities and their caregivers.
