Health advocacy: a vital step in attaining human rights for adults with intellectual disability
Abstract
Background: People with intellectual disability (ID) experience health inequity compared with the general population, a key contributing factor being disparities in social determinants of health. The enactment of the U nited N ations C onvention on the R ights of P ersons with D isabilities (CRPD) provides a platform for the progression and promotion of health and other interconnected rights to address barriers to the highest attainable standard of health for this populace. Rights can be brought to life through advocacy efforts. This paper explores the meaning, perceptions and experiences of advocacy by family members and paid support workers of adults with ID and locates the findings within a health and human rights discourse. Methods: As part of a larger randomised controlled trial, 113 parents and 84 support workers of adults with ID completed a telephone interview that included open‐ended questions about their understanding and experiences of advocacy. Thematic analysis was used to identify relevant themes. Results: Five key themes were identified. The first underscored how advocacy to ‘speak up’ for the person with ID is integral to both parent and support worker roles. The second and third themes considered the contexts for advocacy efforts. Access to quality health care was a core concern, along with advocacy across other areas and sectors to address the person's wider psychosocial needs. The remaining themes highlighted the many dimensions to advocacy, including differences between parent and support worker views, with parental advocacy being an expression of ‘caring’ and support workers motivated by a ‘duty of care’ to protect the individual's ‘rights’. Conclusion: Parent and support worker advocacy provides one means to address the social determinants of health and fulfilment of health rights of and for people with ID. Policy and practice in the context of governmental obligation under the CRPD should support advocacy and make health rights the reality not rhetoric for this group of men and women.
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Tailored services, which are person-centred, flexible, and family-centred, are highly regarded.
“Tailored services, which are person-centred, flexible, and family-centred, are highly regarded.26,72–77”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [72]
People with intellectual disabilities and/or autism value healthcare professionals, their support network, and other professionals who work closely with them and who have specialist knowledge and experience of working with people who have intellectual disabilities.
“People with intellectual disabilities and/or autism value healthcare professionals, their support network, and other professionals who work closely with them and who have specialist knowledge and experience of working with people who have intellectual disabilities.26,67–72”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [72]
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- Authors
- Brolan, C. E., Boyle, F. M., Dean, J. H., Taylor Gomez, M., Ware, R. S., & Lennox, N. G.
- Affiliations
- The University of Queensland (AU)
- Queensland Centre for Intellectual and Developmental Disabilities School of Medicine University of Queensland South Brisbane Qld Australia
- Corresponding author
- Brolan, C. E.
- Venue
- Journal of Intellectual Disability Research
- Publisher
- Wiley
- Published
- 2012-10-29
- Volume
- 56
- Issue
- 11
- Pages
- 1087-1097
- ISSN
- 0964-2633 (ISSN-L)
- 1365-2788
- OpenAlex
- W1830137171
- Cited by
- 33
- References
- 48
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 2 · 2023: 2 · 2022: 3 · 2021: 1 · 2020: 3 · 2019: 3 · 2018: 5 · 2017: 3 · 2016: 4 · 2015: 2 · 2014: 1
- FWCI
- 2.50
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Intellectual Disability Research (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Safety Research › Disability Rights and Representation
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- health advocacy, intellectual disability, human rights, Convention on the Rights of Persons with Disabilities, social determinants of health, health disparities, health care access, duty of care, right to health
- MeSH terms
- Adult, Communication, Community Participation, Female, Persons with Disabilities, Disabled Persons, Health Services Accessibility, Humans, Human Rights, Interviews as Topic, Male, Intellectual Disability, Parents, Patient Advocacy, Social Support, Social Values, Outcome Assessment, Health Care
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