In addition to the right to habilitation and rehabilitation, which are disability-specific services, persons with deafblindness have a right to the highest attainable standard of health, including access to affordable, quality health care, community access to health services, and access to health specialists, including sexual and reproductive health. Discrimination on grounds of disability or other factors is prohibited, and measures to ensure that dignity and autonomy are upheld should be introduced and maintained[i].
Persons with disabilities often require more health care, such as additional screenings and check-ups, follow-up visits, medication, and urgent or emergency care where their impairment links to their health (e.g., eye health) or where the impairment could be likely to cause increased health risks (e.g., increased risk of contracting infectious diseases). A common barrier is the lack of understanding of deafblindness and related health conditions among health professionals[ii]. Persons with disabilities are more likely to have co-morbidities because of the influence of behavioural risk factors, such as reduced physical activity[iii], and the lack of understanding of deafblindness is amplified when there are multiple health issues.
There is emerging anecdotal evidence that persons with deafblindness are at increased risk of mental health conditions due to lack of basic supports, social isolation, and communication challenges, and this may lead to psychosomatic disorders (i.e., physical health conditions because of long-term stress) in addition to mental health conditions in both persons with deafblindness and their family members[iv]. Persons with deafblindness spend extra internal resources on adapting to the dual sensory impairment and interacting with the environment, which can drain the body and mind of energy. Social expectations and the brain’s inclination to want information can play a role in mental health daily. Furthermore, the energy spent in dealing with unsupportive communication strategies or lack of deafblindness-specific approaches during interactions also affects mental health[v]. More research is needed on the mental health of persons with deafblindness to better understand the prevalence of mental health conditions, short- and long-term effects, and approaches for improving and managing mental health outcomes for persons with deafblindness.
In addition, public health information (e.g., on vaccinations and disease prevention) is often not available to persons with deafblindness in accessible formats[vi]. For example, during the recent COVID-19 pandemic, accurate, up-to-date information that was accessible to persons with disabilities, especially persons with deafblindness, was often not available[vii]. Persons with deafblindness often require an interpreter-guide/Deafblind interpreter to access health services. Respondents to WFDB’s survey suggested that where there are no interpreter-guide/Deafblind interpreting services, health professionals often talked to family members, which created an intermediary between the health care professional and persons with deafblindness that may not always be impartial or objective. It can result in discussions and decisions taking place without the direct involvement of the person with deafblindness. This can affect diagnosis and treatment options and may result in serious health consequences (e.g. if the person’s health history is not accurately described)[viii].
The health of children with deafblindness is of particular concern. Data from 36 countries in the MICS shows that children with deafblindness have poorer health outcomes compared with children with other disabilities and children without disabilities.
For example, children with deafblindness (aged 2-4 years) were 20% more likely to have had an acute respiratory infection in the last two weeks and 48% more likely to have experienced diarrhoea in the last two weeks compared to children without disabilities. Further, 22% of children with deafblindness experienced wasting, a sign of malnutrition, which was twice as high as children without disabilities. Children with deafblindness were also 24% more likely to have stunted growth compared to children without disabilities.
The data also revealed that despite having higher health needs, children with deafblindness were equally likely to have health insurance compared to other groups. Overall, access to health insurance was very low in the sampled countries at less than 15% for all groups. The likelihood of seeking health care among children who had diarrhoea or an acute respiratory infection in the last two weeks was similar across groups. For the full data in each country, see Table 4, Annex 1.
[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Article 25.
[iii] World Health Organisation, World Report on Disability, 2011, p. 59.
[iv] The Association of the Swedish Deafblind (FSDB), Tools for Better Health, http://www.fsdb.org/Verktyg-forbattrehlsa.html, accessed October 2021; World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 36.
[v] Danish Association of the Deafblind (FDDB), Finding the balance: Report on deafblind people’s stress and well-being, https://www.fddb.dk/tilbud-til-dig/pjecer-boeger-og-andre-udgivelser/boeger-og-rapporter/at-finde-balancen-en-undersoegelse-om-doevblindes-stress-og-trivsel/, 2013.
[vii] International Disability Alliance, Reaching Persons with Deafblindness during the Covid-19 pandemic, https://www.internationaldisabilityalliance.org/covid-deafblind, 19 April 2020.
Gaps in national health systems affecting the general population affect persons with deafblindness. Even where there are limited resources, specific measures should be addressed. For example, persons with deafblindness should be legally recognised and identified as a priority group in accessing affordable health insurance or state-funded health care (i.e., universal health coverage) because of their disability-related health needs and increased risks of developing other health conditions. In addition, health services should link with disability-specific rehabilitation services to facilitate the identification, assessment, treatment, and rehabilitation of persons with deafblindness. The causes of deafblindness should be researched, as the risk factors may vary across countries.
Key elements to improve health outcomes for persons with deafblindness include:
[i] The Association of the Swedish Deafblind (FSDB), Tools for Better Health, http://www.fsdb.org/Verktyg-forbattrehlsa.html, accessed October 2021; Deaf Scotland et al, Mental Health, Sensory Loss, and Human Rights: A Transition Report Call for Sensory Literate Services, 10 February 2021, p. 11; World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 34-35.
OPDs and NGOs
Donors and Research Institutes