People with psychosocial disabilities

Bhargavi Davar¹, Yenirosa Damayanti¹, Kavita Nair¹, Matrika Devkota¹, Chintha Munasinghe¹, Waqar Puri ¹, Lucy Daniel², Karen Alexander² and Aleisha Carroll²

This ‘Disability equity and rights: Challenges, opportunities, and ways forward for inclusive development’ publication was prepared under the DFAT – CBM Inclusion Advisory Group Disability Inclusion Technical Partnership, an Australian aid initiative implemented by CBM Inclusion Advisory Group and the Nossal Institute for Global Health at the University of Melbourne.

This publication has been funded by the Australian Government through the Department of Foreign Affairs and Trade. The views expressed in this publication are the author's alone and are not necessarily the views of the Australian Government.

Background

Representative organisations of people with disabilities recommended adoption of the term ‘psychosocial disability’ during negotiations of the Convention on the Rights of Persons with Disabilities (CRPD). The term reflects the paradigm shift advocated by the disability movement away from a biomedical model of mental health focusing on treating or curing impairments towards addressing the social and cultural components of psychosocial disability. These components include social and attitudinal barriers, like discrimination and negative stereotypes, that exclude people with psychosocial disabilities from community life or deny access to employment or social protection.  Psychosocial disability describes people who face restrictions in the exercise of their rights and barriers to equal participation based on an actual or perceived mental health condition. The term applies to all people who experience psychosocial distress and related barriers and restrictions, regardless of their diagnosis and/or self-identification.

Opportunities and challenges

Rights abuses faced by people with psychosocial disabilities

People with psychosocial disabilities are one of the most marginalised and disadvantaged groups globally. They experience exceptionally high levels of violence and abuse, much of which is experienced in the communities in which they live.³  Discrimination and prejudice towards people with psychosocial disabilities is pervasive, including in health, education, employment, programs and services. This manifests in higher rates of poverty and an estimated drop in life expectancy of 20 years for men and 15 years for women.^4,5,6 In most settings, people with psychosocial disabilities experience greater discrimination and barriers than people with other impairment types. Additionally, various areas of unique and complex breaches of their rights are not as widely experienced by other people with disabilities.⁷ While all people with disabilities face risk of social prejudice and discrimination, misunderstandings regarding the nature and origins of psychosocial impairments remain common and perpetuate exclusion of and violence towards people with psychosocial disabilities.⁸ The COVID-19 pandemic has deepened these layers of disadvantage.⁹

Transforming Communities for Inclusion (TCI), a global organisation of people with psychosocial disabilities, points to 3 key and grave issues in their 2018 ‘Bali Declaration’.¹⁰ The first is institutionalisation of people with psychosocial disabilities – for more on this topic, see Essay on Deinstitutionalisation .¹¹ Human Rights Watch estimates hundreds of thousands of people with psychosocial (and/or cognitive) disabilities are shackled across 60 countries worldwide, in both institutional and home settings.¹² Institutionalisation today needs to considered within the context of growth within Asia and the Pacific of mental health laws allowing provision for forced admissions and treatment, as highlighted in the Bali Declaration.¹⁰

The CRPD protects an individual’s right to make decisions about matters that affect them. Yet widespread practices and mental health laws remove legal capacity on the basis of mental impairment.¹³ This can include removal of the right to own property, manage money, vote, marry, raise one’s children, or refuse medical treatment, including refusal of sterilisation procedures or psychiatric medication or treatments. Representative groups have been advocating for the abolishment of these laws since before development of the CRPD. However, discrimination and a pervasive framing of the subject as a health rather than disability issue have prevented substantial progress being made. There is also poor awareness about alternatives to the prevailing medical approach, such as community care models and supported decision-making schemes that provide people with psychosocial disabilities the supports they require to make their own decisions on matters that affect them. This contrasts with, for example, having guardians appointed on their behalf.

The Bali Declaration’s third priority area is the systemic discrimination and exclusion of people with psychosocial disabilities within development efforts. In particular, the Declaration highlights the multiple layers of discrimination experienced by women, children, people of diverse sexual orientation, gender identity and expression and sexual characteristics (SOGIESC), and Indigenous and other marginalised groups of people with psychosocial disabilities.¹⁰ People with psychosocial disabilities are not only excluded as beneficiaries from development services and programs, but also as partners and decision-makers through representative bodies despite their rights under Articles 4.3 and 32 of the CRPD.¹⁴ Due to systemic prejudice, people with psychosocial disabilities are significantly underrepresented within cross-disability OPDs and experience marginalisation even within the disability rights movement. Specialised OPDs such as the World Network of Users and Survivors of Psychiatry (WNUSP), TCI, and some emerging specialised OPDs and self-help groups exist. However, they are not given the consultation and attention they deserve on issues affecting their members.¹⁵ UN agencies, including the World Health Organization, need to commit to continue to strengthen how they consult people with psychosocial disabilities and their representative organisations on key initiatives impacting their lives, including reforms to mental health legislation.

Looking ahead to 2030

Focus on community-level inclusion

While there is growing recognition of psychosocial disabilities in international human rights frameworks, progress at national levels is slow and not at the pace required to see significant positive change by 2030. Firstly, increased attention needs to be shifted towards inclusion of people with psychosocial disabilities at the community level. This requires transformative approaches that engage with cultural understandings of psychosocial disability, examine community distributions of power and inequality, and redress past injustices such as harmful forced treatments, exclusions, and discrimination.

People with psychosocial disabilities have a vast range of attributes, capabilities, and strengths, so increasing involvement in their communities is mutually beneficial. Investing in a three-tier approach can ensure people with psychosocial disabilities are both supported and embedded within their communities. The first tier focuses on establishing ‘community support systems’, such as informal networks, self-help groups, drop-in centres, and informal support people that can assist with supported decision making, community clubs and peer support. The second tier focuses on ‘community-based support services’ that people with psychosocial disabilities require to live their day-to-day life. For example, social protection, personal assistance, crisis support, support in securing accessible housing, provision of assistive technology, and support to access mainstream services.¹⁶ The third tier focuses on ‘mainstream services’ such as affordable housing, education, employment, vocational training and healthcare. Increased efforts are needed to deliver each of these tiers in the lead up to 2030. It is also crucial that development efforts focus on mainstreaming disability inclusion with specialised awareness and integration of psychosocial disability inclusion.

Deinstitutionalisation

Many of the Sustainable Development Goals (SDGs) cannot be realised while people with psychosocial disabilities remain institutionalised or shackled and denied their human rights. The SDGs will also not be achieved unless processes of deinstitutionalisation include adequate planning and provision of community-based supports, multidisciplinary psychosocial care, adequate housing, and supported decision-making models, as guided by the CRPD Committee’s 2022 guidelines.¹⁷ Another important aspect of deinstitutionalisation is supporting legal harmonisation processes. By 2030, there should no longer be any laws that override people with psychosocial disabilities’ rights under the CRPD. This includes abolishing mental health laws that do not uphold people with psychosocial disability’s legal capacity, as well as legal reviews for anti-discrimination and equal opportunity, for example within employment and insurance law, and establishing strong justice systems that are accessible for people with psychosocial disabilities.

Separate psychosocial support programs from mental health programs

Properly planning, resourcing, and implementing community-based psychosocial and community support systems requires governments and other stakeholders to recognise the distinction between psychosocial supports and services from mental health programs, and allocate separate funding streams to each of these. This distinction has long been advocated by the psychosocial disability movement as part of the paradigm shift from the biomedical model to the psychosocial disability model, and was recognised by the Human Rights Council’s 2019 Resolution regarding Mental Health and Human Rights. ¹⁸ This urges states to ensure people with psychosocial disabilities have access to a range of human-rights based support and services, including peer support.¹⁹ It also emphasises that states should promote and invest in a multisectoral approach that promotes community-based and person-centred services addressing underlying social, economic, and environmental factors.

Increased awareness raising

Despite the high-level directive from the Human Rights Council, increasing use of the term ‘psychosocial disabilities’, and better understanding of the social and cultural barriers experienced, most governments and organisations continue to channel funding primarily into mental health initiatives that follow a biomedical model of treatment and care. Accordingly, priority must be shown to raising awareness of psychosocial disability supports and services, particularly for national and international stakeholders. Focus should be on the nature of psychosocial disability along with appropriate services, policies, and mechanisms to ensure emphasis on the issues faced by people with psychosocial disabilities as well as their rights. Community awareness raising programs are crucial to removing attitudinal barriers that may exclude people with psychosocial disabilities from employment and participation in community, religious and social events, as well as across disability communities, including generalist OPDs.

Rights-based crisis support

People with psychosocial disabilities may need specific support in times of crisis. Any support provided at a time of crisis should be with the prior consent of the person. The Bapu Trust has developed a model that includes multifaceted strategies for providing crisis support based on many years working with people with psychosocial disabilities.²⁰ These strategies include putting in place a safety plan with the person; providing preferred support options, including a ‘circle of care’, which enhances social capital at times of greatest need; ensuring the continuation of basic needs; holding ‘panchayats’ (confrontation meetings) around disability exclusion; and supporting access to community justice systems and formal legal processes as needed.

Appropriate social protection schemes

Many low- and middle-income countries have minimal social protection programs, and where these do exist, people with psychosocial disabilities often face higher barriers to accessing them. For example, people with psychosocial disabilities may encounter difficulties registering or demonstrating eligibility for benefits due to the ‘invisible’ nature of psychosocial disability, or due to fear around disclosing their disability due to prejudicial attitudes in society. Exclusion from social protection schemes place people with psychosocial disabilities under much higher stress and marginalisation, breaching their rights, and increasing their exclusion from society.

Partnership with representative organisations of people with psychosocial disabilities

All listed priority actions should be discussed, planned, and implemented in partnership with representative organisations of people with psychosocial disabilities. Partnership indicates inviting people with psychosocial disabilities to have active involvement with decision-making and respecting their right to state their views on matters rather than presuming what these will be, or the correct way forward. People with psychosocial disabilities should not be treated as mere informants during consultations but instead as the driving force. Investing in established and emerging psychosocial OPDs’ core viability through ongoing flexible and other funding will sustain these priorities.

Authors

Bhargavi Davar (PhD), Transforming lives: Deinstitutionalisation, was a noted mental health advocate and human rights activist in India and across Asia. Bhargavi was Executive Director of TCI-Global) and Founder of the Bapu Trust for Research on Mind and Discourse. Bhargavi passed away in 2024.

Lucy Daniel, Inclusion Advisory Group, CBM Australia, is a senior technical advisor with a background in law and community development. Her work focuses on policy development and rights-based engagement with people with disabilities and their representative organisations including the most marginalised groups

Aleisha Carroll, Inclusion Advisory Group, CBM Australia, is a technical advisor and research lead with training in occupational therapy and public health. Her work centres on disability equity and rights focusing on marginalised disabilities, health systems, and the intersection of gender, age, and disability.

Yenirosa Damayanti, Kavita , Matrika Devkota, Chintha Munasinghe, and Waqar Puri from Transforming Communities for Inclusion (TCI); and Karen Alexander, Inclusion Advisory Group, CBM Australia also contributed to this essay.

References

[1] Transforming Communities for Inclusion (TCI).

[2] CBM Australia Inclusion Advisory Group. Corresponding author: Lucy Daniels, ldaniel@cbm.org.au

[3] Drew N, Funk M, Tang S, Lamichane L, Chavez E, Katontoka S, Pathare S, Lewis O, Gostin L, and Saraceno B. 2011. Human rights violations of people with mental and psychosocial disability: an unresolved global crisis. The Lancet, 378(9803), pp.1664-1675 https://pubmed.ncbi.nlm.nih.gov/22008426/

[4] United Nations Human Rights Office. 2017. Mental Health and Human Rights - Report of the United Nations High Commissioner for Human Rights. https://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/34/32

[5] Ebuenyi D I, Syurina E V, Bunders J F G, and Regeer B J. 2018. Barriers to and facilitators of employment for people with psychiatric disabilities in Africa: a scoping review, Global Health Action, 11(1). https://pubmed.ncbi.nlm.nih.gov/29764342/

[6] Hjorth C F, Bilgrav L., Frandsen L S. Overgaard C, Torp-Pedersen, C, Nielsen, B, et al. 2016. Mental health and school dropout across educational levels and genders: a 4.8-year follow-up study. BMC Public Health, 16. https://doi.org/10.1186/s12889-016-3622-8

[7] World Health Organisation and World Bank. 2011. World Report on Disability. World Health Organisation, Geneva. https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/world-report-on-disability#:~:text=World%20Report%20on%20Disability%202011,a%20figure%20of%20around%2010%25

[8] Human Rights Watch. 2020. Living in Chains: Shackling of People with Psychosocial Disabilities Worldwide. Human Rights Watch, New York. https://www.hrw.org/report/2020/10/06/living-chains/shackling-people-psychosocial-disabilities-worldwide

[9] Knapp M, Cyhlarova E, Comas-Herrera A and Lorenz-Dant K. 2021. Crystallising the Case for Deinstitutionalisation: COVID-19 and the Experiences of Persons with Disabilities. Care, Policy and Evaluation Centre – Research at London School of Economics, London. https://www.lse.ac.uk/cpec/assets/documents/CPEC-Covid-Desinstitutionalisation.pdf

[10] Transforming Communities for Inclusion. 2018. Bali Declaration. https://tci-global.org/bali-declaration/#:~:text=At%20a%20plenary%20meeting%20of,disabilities%20from%20the%20Pacific%20region

[11] Disability Equity and Rights: Challenges, opportunities, and ways forward for inclusive development - Transforming lives: Deinstitutionalisation for people with disabilities, Bhargavi Davar, Transforming Communities for Inclusion Global; Aleisha Carroll, CBM Global Inclusion Advisory Group

[12] Human Rights Watch. 2020. Living in Chains: Shackling of People with Psychosocial Disabilities Worldwide. Human Rights Watch, New York. https://www.hrw.org/report/2020/10/06/living-chains/shackling-people-psychosocial-disabilities-worldwide

[13] See Stein M, Mahomed F., Patel V, and Sunkel C. (Eds.). 2021. Mental Health, Legal Capacity, and Human Rights.  Cambridge University Press, Cambridge.

[14] United Nations. 2006. United Nations Convention on the Rights of Persons with Disabilities. https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf

[15] For example, TCI members shared that they were recently not consulted on an upcoming UN resolution titled “General Assembly resolution on mental health and psychosocial support for sustainable development and peace”. See further: TCI. 2023. Stop Psychiatrizing the SDGs. https://tci-global.org/stoppsychiatrizingsdgs/

[16] For a discussion of what community-based support services should involve, see: CBM Global Inclusion Advisory Group, International Disability Alliance, Pacific Disability Forum, Transforming Communities for Inclusion. 2022. People with Psychosocial Disabilities in Disaster Events. CBM Global, Melbourne. https://cbm-global.org/resource/people-with-psychosocial-disabilities-in-disaster-events

[17] Committee on the Rights of Persons with Disabilities. 2022. Guidelines on deinstitutionalization, including in emergencies. https://www.ohchr.org/en/documents/legal-standards-and-guidelines/crpdc5-guidelines-deinstitutionalization-including

[18] Human Rights Council. 2019. Mental Health and Human Rights.  https://undocs.org/Home/Mobile?FinalSymbol=A%2FHRC%2FRES%2F43%2F13&Language=E&DeviceType=Desktop&LangRequested=False

[19] Peer support services are provided by people with lived experience and give opportunities for people to receive support on issues that they consider important to their own lives in a way that is free from judgment and assumptions.

[20] Bapu Trust for Research on Mind and Discourse. 2020. About us. https://baputrust.com/

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