How can access barriers be removed to ensure that people with psychosocial, developmental, and neurological disabilities can access all forms of healthcare?

Equity Depth Local Relevance Feasibility
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Question & problem

At least 15% of the global population has some form of impairment or disability. Despite having higher needs for healthcare services, people with psychological, developmental, and neurological impairments routinely face barriers that limit their access and utilization of preventive, promotive, curative, and rehabilitative healthcare services which they urgently require to improve quality of life and prevent premature mortality. Access to healthcare is a basic human right clearly articulated in the Sustainable Development Goals agenda as 'Universal health coverage' (UHC). Unfortunately, people with these specified impairments face diverse barriers which limit access and utilization of existing healthcare services. Achieving UHC for such impairments necessitates addressing these access barriers.

Quote

"Expanding health insurance coverage, improving infrastructure with the decentralization of healthcare, and adequate training and staffing of care facilities, combined with investment in structured health promotion are fundamental steps towards addressing these challenges”
Mwangi LW et al., 2022

Recommendations

There is a need to develop national-level policies, legal, and institutional frameworks to regulate healthcare systems in offering disability-inclusive healthcare services.

Key recommendation

There is a need to develop national-level policies, legal, and institutional frameworks to regulate healthcare systems in offering disability-inclusive healthcare services.

Action

Each country needs to develop and implement laws, policies, and regulatory frameworks for existing healthcare institutions to offer all-inclusive healthcare services for people with psychological, developmental, and neurological impairments and disabilities (PDNI). States should support and strengthen the healthcare systems to implement the existing policies and guidelines. Promote the successful implementation of policies and guidelines with support from political leaders, relevant ministries and departments at the national and sub-national levels, managers of the healthcare organizations and the healthcare financing systems, people living with PDNI, and advocacy groups from the communities.

It is imperative to train healthcare staff about providing care.

Key recommendation

Healthcare staff training about providing care for this unique population

Action

Relevant healthcare institutions, ministries, state departments, and training institutions to train the healthcare workforce in providing coordinated, non-discriminatory, and need-based healthcare for people with PDNI.

Medical educational institutions can also consider integrating Disability Education into the healthcare curricula including opportunities for professional development by existing physicians to take part in workshops and courses that encourage principles of inclusive care and frontline psychosocial approaches.

There is a need to provide health insurance and socio-economic empowerment.

Key recommendation

Health insurance and socio-economic empowerment for people with PDNI

Action

Governments should in collaboration with healthcare financing institutions, provide comprehensive medical insurance covering all direct expenses associated with healthcare. These should be driven by inclusive insurance policies co-designed with people with PDNI, their caregivers, and their healthcare workers. Additionally, people with PDNI should also be supported with the skills (e.g. networking or communication skills) required to advocate for their needs at the policy level for their rights to equitable educational and employment opportunities.

Health promotion and information dissemination are needed to support access to healthcare services.

Key recommendation

Health promotion and information dissemination to promote access to healthcare services

Action

Healthcare providers should take part in community outreach programs to promote and advocate for the healthcare needs and rights of people with PDNI in their communities. Providers can partner with disability organizations and advocacy groups to design and deliver these through community camps or workshops in clinics to make sure they are targeted in messaging to improve help-seeking and debunking stigmatizing attitudes, and social stigma.

There is a need for an infrastructural redesign to address structural barriers.

Key recommendation

Infrastructural redesign to address structural barriers

Action

Government institutions should regulate infrastructural development by developing accessibility standards, conducting audits to identify barriers, and incorporating actions to enforce compliance by healthcare facilities, sanitary facilities, and transport systems to address common barriers experienced by people with PDNI.

Challenges

Challenge #1: Country-specific policies and legal frameworks for inclusive healthcare for people with psychological, developmental, and neurological impairments (PDNI) are absent in many low-and middle-income countries (LMICs). 

  • There are shortcomings in the legal and policy environment to support the provision of responsive and comprehensive healthcare for people with PDNI in LMICs. Consequently, people with PDNI face access barriers including unavailability, inadequacy, and sometimes total lack of certain healthcare services such as rehabilitation, since the broad policy guidelines are either unavailable or silent about the required services.  
  • While most countries in LMICs have challenges with implementing the existing policies and legal frameworks for the healthcare of people with PDNI, others are yet to develop or update their policies and legal frameworks to guide the provision of healthcare services for people with PDNI.

Challenge #2: The healthcare workforce may not be adequately prepared to provide care

  • Most resources, training, and health workforce capacity development have been directed toward addressing infectious diseases and reducing mortality and not directed towards addressing chronic and lifelong conditions such as PDNIs.  Task-shifting and task-sharing approaches may offer temporary but not long-term solutions to the existing training gaps. There are also reports of professional stigma which may negatively impact the readiness of people with PDNI from seeking care.
  • Healthcare provision for people with PDNI must be coordinated based on the choices and preferences of people with PDNI and their caregivers. However, there is evidence of a lack of coordination, continuity, consistency, and disjointed care between the different departments, levels, and care providers in LMICs.

Challenge #3: People with PDNI face economic challenges which prevent access to all forms of healthcare.

  • People with PDNI usually lack insurance coverage and plans to cover direct and indirect costs associated with seeking healthcare. In some instances, some services such as rehabilitative care or the costs for acquiring assistive devices may not at all be covered by the available insurance policies.
  • They are also disadvantaged in accessing education, and gainful employment and may not fully get integrated into the communities to participate in socio-economic activities. Some of the challenges are related to societal stigma, beliefs, and attitudes, and not necessarily about their ability to participate in socio-economic activities.
  • The healthcare systems in most LMICs lack sufficient resources for rehabilitation, and provision of assistive technology and devices because more resources have been prioritized towards addressing infectious diseases and reducing mortality.

Challenge #4: Societal barriers and lack of information contribute to healthcare inaccessibility.

  • Myth-based beliefs concerning the aetiology or cause of PDNI are associated with societal stigma, discrimination, undesirable attitudes, and the non-utilization of healthcare services by people with PDNI.
  • The lack of knowledge or information coupled with societal stigma usually prevents the utilization of formal healthcare, where some individuals may opt for alternative sources of care such as traditional healers.

Challenge #5: Several structural barriers prevent people with PDNI from accessing preventive, promotive, curative, and rehabilitation care.

  • There is still a lack of disability mainstreaming in that the infrastructural design of the healthcare facilities, the sanitary facilities, and the public transport systems lack reasonable accommodations to support accessibility for people with PDNI.

Finding the answers

We conducted a review of reviews, examining systematic, narrative, and other types of review evidence on the topic of barriers to access to healthcare services for people with psychological, developmental, and neurological impairments (PDNI). All recommendations on the approaches how to remove these barriers and ensuring that people with PDNI can access all forms of required healthcare are based on reviews of literature from low- and middle-income countries, as well as some reviews of literature from high-income countries where the recommendations made were transferable to low-resource settings. This evidence note is based on the findings of 7 reviews of low- and middle-income country evidence, 2 reviews that covered literature from a range of settings, and 4 reviews concerning evidence from high-income countries.

Recommendations & actions

There is a need to develop national-level policies, legal, and institutional frameworks to regulate healthcare systems in offering disability-inclusive healthcare services.

Key recommendation

There is a need to develop national-level policies, legal, and institutional frameworks to regulate healthcare systems in offering disability-inclusive healthcare services.

Action

Each country needs to develop and implement laws, policies, and regulatory frameworks for existing healthcare institutions to offer all-inclusive healthcare services for people with psychological, developmental, and neurological impairments and disabilities (PDNI). States should support and strengthen the healthcare systems to implement the existing policies and guidelines. Promote the successful implementation of policies and guidelines with support from political leaders, relevant ministries and departments at the national and sub-national levels, managers of the healthcare organizations and the healthcare financing systems, people living with PDNI, and advocacy groups from the communities.

It is imperative to train healthcare staff about providing care.

Key recommendation

Healthcare staff training about providing care for this unique population

Action

Relevant healthcare institutions, ministries, state departments, and training institutions to train the healthcare workforce in providing coordinated, non-discriminatory, and need-based healthcare for people with PDNI.

Medical educational institutions can also consider integrating Disability Education into the healthcare curricula including opportunities for professional development by existing physicians to take part in workshops and courses that encourage principles of inclusive care and frontline psychosocial approaches.

There is a need to provide health insurance and socio-economic empowerment.

Key recommendation

Health insurance and socio-economic empowerment for people with PDNI

Action

Governments should in collaboration with healthcare financing institutions, provide comprehensive medical insurance covering all direct expenses associated with healthcare. These should be driven by inclusive insurance policies co-designed with people with PDNI, their caregivers, and their healthcare workers. Additionally, people with PDNI should also be supported with the skills (e.g. networking or communication skills) required to advocate for their needs at the policy level for their rights to equitable educational and employment opportunities.

Health promotion and information dissemination are needed to support access to healthcare services.

Key recommendation

Health promotion and information dissemination to promote access to healthcare services

Action

Healthcare providers should take part in community outreach programs to promote and advocate for the healthcare needs and rights of people with PDNI in their communities. Providers can partner with disability organizations and advocacy groups to design and deliver these through community camps or workshops in clinics to make sure they are targeted in messaging to improve help-seeking and debunking stigmatizing attitudes, and social stigma.

There is a need for an infrastructural redesign to address structural barriers.

Key recommendation

Infrastructural redesign to address structural barriers

Action

Government institutions should regulate infrastructural development by developing accessibility standards, conducting audits to identify barriers, and incorporating actions to enforce compliance by healthcare facilities, sanitary facilities, and transport systems to address common barriers experienced by people with PDNI.

Policy priorities

Successful development and implementation of the relevant policy, legal, and institutional frameworks in LMICs will require an active engagement of all stakeholders such as governments, healthcare systems, advocacy groups, and people with psychological, developmental, and neurological impairments (PDNI) and their caregivers. Governments should develop appropriate policies and legal and institutional frameworks to regulate all-inclusive healthcare service delivery. The ministries of health should offer additional training for healthcare workers' delivery based on the expressed needs of people with PDNI and their caregivers.  Finally, healthcare providers should promote and disseminate relevant health messages for people with PDNI and their caregivers.

Conclusion

Empirical evidence from low-and middle-income countries indicates that a lack of country-specific policies and regulations, an inadequately prepared healthcare workforce, economic challenges, stigma, lack of information, and infrastructural barriers prevent people with psychological, developmental, and neurological impairments from accessing healthcare. Development and implementation of legal and institutional frameworks for the provision of healthcare, additional training of the healthcare workforce, comprehensive medical insurance, health promotion and information dissemination to the communities, and infrastructural redesigning of transport and healthcare facilities can support people with disabilities to access at forms of healthcare that they need to improve their quality of life and prevent premature mortality.

Gaps & research needs

There is an urgent need for research identifying interventions that increase access and utilization of healthcare services by people with psychological, developmental, and neurological impairments in low-and middle-income countries. 

Acknowledgements

I acknowledge the DEP team at the London School of Hygiene at Tropical Medicine, UK, and particularly my mentor Ms Onaiza Qureshi, and the funders for this supporting this important work.

Peer Review: This brief has been reviewed by Sarah Marks, Research Fellow at International Centre for Evidence in Disability, LSHTM and Onaiza Qureshi, Knowledge Exchange Officer, Disability Evidence Portal.

Publication details: Disability Evidence Portal, London School of Hygiene & Tropical Medicine, May 2023.

Suggested citation: Jonathan A. Abuga. Evidence Brief: How can access barriers be removed to ensure that people with psychosocial, developmental, and neurological disabilities can access all forms of healthcare? Disability Evidence Portal, 2023

Disclaimer: The views expressed in this publication are those of the author/s and should not be attributed to Disability Evidence Portal and/or its funders