Towards an agenda of action and research for making health systems responsive to the needs of people with disabilities

Abstract

Ensuring health systems responsiveness is crucial for health equity and outcomes of all individuals, particularly disadvantaged groups such as people with disabilities. However, attention to and discussions on health system responsiveness for people with disabilities remains lacking. This viewpoint highlights the pervasive issues within health systems rooted in ableism and proposes an agenda to tackle ableism, aiming to make health systems responsive to the needs of people with disabilities. Their needs are complex and diverse, varying with the disability, its severity, progression, and intersection with other factors. Ableism creates significant obstacles to identifying and addressing their needs and expectations, damages provider–patient interactions, poses multiple challenges in healthcare, and impacts the overall responsiveness of the health system to the populations it is meant to serve. The proposed agenda outlines areas for action and research across six building blocks of health systems as a way forward to enhance the health system's responsiveness to the needs of people with disabilities.

Full text

Towards an agenda of action and research for making health
systems responsive to the needs of people with disabilities
Thi Vinh Nguyen and Sumit Kane
∗
Nossal Institute for Global Health, Melbourne School of Population and Global Health, The University of Melbourne, Victoria, 3010, Australia
Summary
Ensuring health systems responsiveness is crucial for health equity and outcomes of all individuals, particularly
disadvantaged groups such as people with disabilities. However, attention to and discussions on health system
responsiveness for people with disabilities remains lacking. This viewpoint highlights the pervasive issues within
health systems rooted in ableism and proposes an agenda to tackle ableism, aiming to make health systems
responsive to the needs of people with disabilities. Their needs are complex and diverse, varying with the disability, its
severity, progression, and intersection with other factors. Ableism creates significant obstacles to identifying and
addressing their needs and expectations, damages provider–patient interactions, poses multiple challenges in
healthcare, and impacts the overall responsiveness of the health system to the populations it is meant to serve. The
proposed agenda outlines areas for action and research across six building blocks of health systems as a way forward
to enhance the health system’s responsiveness to the needs of people with disabilities.
Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY-NC
license (http://creativecommons.org/licenses/by-nc/4.0/).
Keywords: Health systems; Responsiveness; Disability; Equity; Global health
Introduction
Approximately 16% of the world population, equalling
1.3 billion people, have disabilities.
1
Although attention
to healthcare related needs and expectations of people
with disabilities has been increasing, inequities remain
stubbornly persistent, and their right to the highest
attainable standard of healthcare is far from being
realised and reached.
1,2
For instance, all-cause mortality
among people with disabilities is 2.24 times higher than
that of people without disabilities, and there is a 13.8-
year gap in life expectancy between the two groups.
3
In almost all parts of the world, people with disabil-
ities are regarded as a vulnerable population, their needs
and rights, including healthcare rights, are still
frequently overlooked.
4
To promote health equity and
rights, it is crucial that the needs and legitimate expec-
tations of people with disabilities are appropriately
responded to within health systems and healthcare
services. WHO (2000) noted that “where health and
responsiveness are concerned, achieving a high average
level is not good enough: the goals of a health system
must also include reducing inequalities, in ways that
improve the situation of the worst-off”.
5
(pviii)
Responsiveness to the expectations of the population
is one of the three primary goals of national health
systems, along with achieving good health and ensuring
fairness of financial contribution.
5
The conceptual
framework on health systems responsiveness proposed
by Mirzoev and Kane (2017) (Fig. 1) sees people’s ex-
pectations from and the experience of interactions with
their health system along eight domains, and recognises
that both health systems and community side factors
(e.g actors, processes) shape these expectations and ex-
periences of interations. The framework argues that
these interactions are in turn embedded within and
influenced by both, the broader, entrenched historical,
political, cultural, social, and economic context, and the
entrenched social and relational dynamics within com-
munities and families. The premise being that it is
important to recognise many ways in which this layered,
often entrenched context influences people’s interaction
with the health system that is meant to serve them.
Despite advancements in disability rights, ableism
continues to hinder healthcare access and quality to
people with disabilities.
7
Ableism refers to “asystemof
historical and contemporary policies, institutions, and
societal norms and practices that devalue and disadvan-
tage people who are disabled…and privilege people who
are positioned as able-bodied and able-minded”.
7
(p1)
It
systemically discriminates people with disabilities based
on their disabilities.
8
Ableism arises from the biomedical
model of disability, which views disability primarily as “a
negative deviation from normal”
9
(p.50)
and as a medical
issue that requires treatment or cure.
10
This view has
been criticised for excessively focusing on the impair-
ment rather than considering and recognising disability
as integral to and as a part of human diversity. This
ableist deficit oriented view not only leads to the
*Corresponding author.
E-mail addresses: sumit.kane@unimelb.edu.au (S. Kane), thivinh.
nguyen@unimelb.edu.au (T.V. Nguyen).
The Lancet Regional
Health - Western Pacific
2024;52: 101225
Published Online xxx
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devaluation of people with disabilities, it leads to the
neglect of the role of social-structural factors in deter-
mining whether and to what extent people with disabil-
ities can achieve their potential and live the lives they
would like to live.
11
This viewpoint highlights the pervasive issues within
health systems rooted in ableism and proposes an agenda
to tackle ableism with a view to make health systems
responsive to the needs of people with disabilities. To
address ableism effectively, it is crucial to challenge the
deficit-oriented model and to shift towards human rights
model that conceptualises people with disabilities as
equal rights holders, embraces disability as a part of
human variation, and recognises disability as also
resulting from barriers within the society.
12
We argue that
disability responsiveness requires a whole of system
approach and that ableism should be addressed in every
aspect of health systems. WHO’s six building blocks will
be used illustrate areas for actions and research in the
agenda.
13
This viewpoint seeks to trigger a broad-based
discussion on ableism in health systems and the health
systems responsiveness literature, and calls for further
research and actions in this important field.
7
Ableism: a barrier to health systems
responsiveness to people with disabilities
In health systems, ableism manifests in many ways,
through pervasive stereotypes, biases, prejudices, and
discrimination against individual with disabilities.
7
Despite advances in disability scholarship that empha-
sise the social construction of disability, the traditional
biomedically informed deficit oriented view of disability
persists in health systems, perpetuating ableism across
its various facets.
7,10,14
People with disabilities are
assumed to be passive, voiceless and powerless re-
cipients of care, rather than as persons with the auton-
omy and capability to make informed decisions
regarding their own well-being and care.
15
For instance,
it is not uncommon for healthcare administrators,
support staff, and providers to view individuals with
disabilities as being “disabled”in their ability to make
decisions, so they choose to communicate with their
escorts instead.
16
Consequently, their voices are under-
heard, their expectations and needs are under-
recognised, and their experiences and agency within
healthcare interactions are inadequately understood.
Importantly, ableism within health systems can influ-
ence and obstruct the recognition of what is considered
legitimate as ableist attitudes and assumptions can un-
dermine and distort the needs and expectations of
people with disabilities. A truly responsive health sys-
tem would acknowledge and appropriately respond to
the needs and legitimate expectations of people with
disabilities.
5,6
Unless the legitimate expectations and
needs of people with disabilities are fully acknowledged
and integrated throughout the health sytems, healthcare
practices and services will continue to be delivered in
Fig. 1: Conceptual framework for health systems responsive to people with disabilities (Slightly adapted from Mirzoev and Kane 2017 to
focus specifically on people with disabilities
6
).
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normative and historically routinised ways that do not
appropriately consider and mainstream their specific
needs. Therefore, it is crucial to examine how these
expectations are framed within the broader context of
ableism and to ensure meaningful engagement with
people with disabilities to correct faulty, ableist as-
sumptions about their needs and expectations.
11
People with disabilities are a diverse group with a
range of unique needs depending on disability (e.g.
physical, sensory, intellectual, psychosocial, etc.),
severity of disabilities, number and state (progressive-
ness) of disabilities.
1
Needs are further complicated by
their unpredictability and due to the intersection of
disability with other factors such as gender, employ-
ment, income, family status, educational level, residen-
tial conditions, and motherhood.
11,15
As outlined in the
conceptual framework (Fig. 1), the essence of a
responsive health system lies in its ability to effectively
interact and collaborate with this diversity—of persons
with disabilities, of their families, and of communities
to understand and address their unique and diverse
needs and legitimate expectations at these in-
tersections.
17
However, ableism, manifests in and often
operates through legacy policies, guidelines, standards
of care, and routine practices–what has been called
institutional logics - and compromises the ability of the
health system and the providers that inhabit the system,
to be responsive to those with disabilities. Briefly,
institutional logics are ‘systems of ideas (logics)’that
govern societal actions and interactions.
18
They are the
rules of the game, the organising principles and as-
sumptions that guide practices and actions within an
entire field of organisations.
19
These logics are the
means by which power, status and legitimacy are
gained, maintained (and lost) in and between organi-
sations. Ableism, operating thus, often insidiously un-
dermines the flexibility, autonomy and resources of
healthcare providers in meeting the needs, changing
needs, and legitimate expectations of people with dis-
abilities. This translates into the health system, para-
doxically, and we argue, deeply problematically,
contributing to further entrenching and increasing dis-
parities in care, denying or delaying people with dis-
abilities with equitable access to necessary care, support
and services.
7
Despite the United Nations Convention on the
Rights of Persons with Disabilities’s (UNCRPD)
mandate for the highest attainable standard of health
and healthcare without discrimination (Article 25),
health systems worldwide continue to fall short in being
responsive to the needs and legitimate expectations of
people with disabilities.
1,4,20
Looking at care provision,
just one of the six bulding blocks of the health system as
a case helps illustrate this point. Research continues to
reveal that care provision settings, particularly in low
and middle-income countries (LMICs), continue to be
designed such that they are inaccessible and unfriendly
for people with disabilities, long administration pro-
cesses, inadequate communication and information
access, unaffordable cost of services, and disability un-
aware and incompetent healthcare providers.
1,16,21
All of
these ableist challenges may undermine people with
disabilities’autonomy, dignity, privacy and indepen-
dence, risk their safety, and limit their choice of
adequate, respectful, and dignified care—key aspects of
health system responsiveness outlined in the conceptual
framework -resultingin an unresponsive care experi-
ence. Such ableism can undermine patient–provider
interaction and trust, further exacerbating the chal-
lenges in achieving health systems responsiveness for
people with disabilities.
22
This situation with care pro-
vision can be understood in light of the body of evidence
that suggests that healthcare providers–in LMICs and
also in high-income countries
23
–often lack disability
awareness and confidence because their training and
continuing professional development activities do not
address these areas.
24
Healthcare providers are social-
ised within their trainings and professional routines to
work with the biomedical deficit oriented view of
disability as the norm—a norm that perpetuates ableist
attitudes instead of challenging and addressing them.
10
Addressing the diverse needs of people with dis-
abilities requires recognising that what gets counted is
often all what counts. Disability identification is often
not recorded in national health information systems in
both high-income and low-and middle-income coun-
tries, making it difficult to recognise the needs of
people with disabilities and to develop policies, pro-
grams, and services based on routine health service
data.
15,25
The UNCRPD recommends disaggregating
routine data by disability to identify and address bar-
riers faced by persons with disabilities in healthcare.
4
Toolssuchasthe“Missing Billion”disability-
inclusive health system framework can be useful to
monitor whether routine health data is disaggregated
by disability and whether the health system is inclusive
of disability.
26
Such approaches can enhance the un-
derstanding of the needs and expectations of people
with disabilities, improve the monitoring and reporting
of disability-related inequalities, and better inform
health systems responses.
25,26
The broader historical, political, socio-cultural, and
economic context perpetuates and reinforces ableism
throughout the entire system (Fig. 1). Negative socio-
cultural attitudes towards disability, lack of health pol-
icies and programs targeting people with disabilities,
inadequate budget allocation to their healthcare, and the
presence of disability-unfriendly infrastructure and
inaccessible information contribute to this systemic
issue.
27
These factors not only influence the healthcare-
seeking decisions of people with disabilities but also
determine the types of services available and offered to
them. More problematically perhaps, these contextual
influences perniciously constrain and limit disabled
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people’s“horizon of expectations”.
28
Although disability
rights and human rights advocates have made signifi-
cant strides in challenging and tackling entrenched
ableist norms and practices within health systems and
in society at large, ableism persists across all social
spheres.
10
As a result, many people with disabilities
come to accept low levels of health system responsive-
ness as their lot and as the norm, and do not have the
social space to imagine, let alone demand, what should
be reasonable, rightful, and legitimate expectations to
have.
6,17
People with disabilities not just need healthcare
providers, administrators and all individuals involved in
their care to be disability competent, they need everyone
to embrace and champion anti-ableism.
Tackling ableism: towards an agenda for health
systems responsive to the needs of people with
disabilities
Despite people with disabilities being the largest minor-
ity, they receive disproportionately less attention within
health systems and continue to face significant in-
equities.
1,2
These inequities are particularly pronounced
in LMICs, where resources are often limited, and health
systems may be inadequately equipped to address their
complex needs.
1
These challenges derive not only from
physical and attitudinal barriers within healthcare fa-
cilities but also from entrenched ableism within the
health systems. A disability-responsive health system
recognises ableism and understands the diverse and
unique needs, expectations, and experiences of people
with disabilities. It however needs to go further to
actively implement policies, practices, and services
tailored to the needs of disabled persons, integrating
disability-specific considerations into all aspects of the
health system.
2,29
Health systems that are responsive to the needs and
expectations of people with disabilities are more likely to
enhance service uptake, improve treatment adherence,
and ultimately ensure better health outcomes and
equitable care.
5,30
We propose an agenda for actions and
research across the six WHO building blocks for health
system responsiveness—here, we call to reimagine
these building blocks as disability-responsive service
delivery, disability-responsive health workforce,
disability-responsive medical technologies, disability-
responsive health management information systems
(HMIS), disability-responsive financing, and disability-
responsive leadership and governance.
13
In Table 1,we
present example areas for action and research that have
been identified based on current evidence and from
human rights and health systems responsiveness
Building block Example areas for action Example areas for research
Disability-responsive
leadership and
governance
•Identifying and developing a consensus around the legitimate expectations
of people with disabilities from the health system.
6
•Implementing and enforcing disability-inclusive health policies to eliminate
ableism and enhance health systems responsiveness.
31
•Exploring expectations and needs of people with disabilities regarding health
system responsiveness and investigate the effectiveness of health policies and
governance frameworks in promoting anti-ableism, thereby informing
disability-responsive leadership and governance.
6,30
•Evaluating governance and leadership models and approaches aimed at
eliminating ableism and enhancing health system responsiveness for people
with disabilities.
Disability-responsive
service delivery
•Encouraging health personnel to address ableist stereotypes and establish
zero-tolerance policies for discrimination. Promoting diversity, equity and
inclusion in health systems.
32
•Developing accessible healthcare facilities and services for people with
disabilities as mainstream users.
33
•Regularly assessing the health system’s responsiveness to people with
disabilities across different service contexts.
•Evaluating innovative health interventions for reducing ableism and improving
care for people with disabilities.
Disability-responsive
health workforce
•Providing ongoing disability training, that integrates ableism, rights, and
needs of people with disabilities, for healthcare providers, managers, policy
makers, and support staff.
34
•Ensuring a supportive, anti-ableism workplace for employees with disabilities
in health systems.
35
•Conducting research to identify effective training approaches and evaluating
their impact on providers’competence, quality of care, and patient
outcomes.
34
•Investigating barriers to implementing disability training and involving people
with disabilities in those training.
Disability-responsive
medical technologies
•Innovating and adapting medical technologies, including assistive products,
telehealth, etc. to be accessible and affordable for people with disabilities.
36
•Including people with disabilities designing and testing medical technologies
and products.
36
•Evaluating the suitability and impact of medical technologies for people with
disabilities.
37
•Researching ableism in the design and implementation of medical
technologies.
Disability-responsive
HMIS
•Integrating disability data and anti-ableism and disability-responsive in-
dicators in HMIS.
29,38
•Establishing data linkages between health systems and social services for
people with disabilities and routinely assessing service coordination.
25
•Identifying challenges and strategies for integrating disability data and anti-
ableism and disability-responsive indicators into HMIS.
•Researching the use of disability-integrated data in HMIS for evidence-based
policy making and resource allocating.
Disability-responsive
financing
•Ensuring equitable resource allocation, inclusive health insurance, and private
sector engagement in supporting disability-responsive health systems.
31
•Providing adequate funding to develop integrated, innovative services that
tackle ableism and promote responsiveness to people with disabilities.
39
•Conducting economic analysis of programs to enhance the health system’s
responsiveness to people with disabilities.
•Identifying barriers to equitable resource allocation for disability-responsive
health systems and proposing strategies to address them.
Table 1: Examples of action and research areas for making health systems responsive to people with disabilities.
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4 www.thelancet.com Vol 52 November, 2024

perspective. These examples are illustrative rather than
definitive. They are, as Lakin & Kane (2023)
40
have
argued, meant to serve as starting points and as triggers
to create spaces for equitable and meaningful partici-
pation, contestation, and negotiations to arrive at a
common understanding of what people with disabilities
can legitimately and rightfully expect from their health
systems. It is crucial that all actions and research involve
disability organisations and people with disabilities to
ensure comprehensive insights into how ableism man-
ifests in health systems, and how it should be
tackled.
2,7,35
Conclusion
Addressing ableism in health systems is essential for
advancing health systems responsiveness and promot-
ing equitable healthcare access for people with disabil-
ities. This viewpoint underscores the importance of
identifying, calling out, and tackling pervasive ableism
in health systems, and highlights the importance of
doing so if we wish to make our health systems truly
responsive and equitable. It proposes an agenda with
various example areas for action and research aimed at
systematically addressing ableism, with the ultimate
goal of making health systems more inclusive and
responsive to the diverse and unique needs of people
with disabilities. Health policymakers, managers, and
care providers should work alongside people with dis-
abilities, their families, and communities to design and
implement comprehensive reforms that dismantle
ableist practices and ensure disability inclusive and
responsive health systems.
Contributors
TVN and SK contributed to the conceptualisation, methodology, litera-
ture search, writing—original draft, and writing—review & editing.
Declaration of interests
The authors report no declarations of interest.
Acknowledgements
Funding: No external funding was used for this Viewpoint.
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