The first step for persons with deafblindness in accessing services includes:
Deafblindness is not necessarily easy to detect in many cases. For example, infants and young children with deafblindness need to be screened to detect vision and hearing loss[i], which may not be detected until the child shows signs of developmental delays because deafblindness in children affects their access to information, and thus their learning. In adults, and particularly older persons, the onset of deafblindness can be gradual and therefore easily overlooked. It is often identified by family members if noticed at all. Health care professionals often miss the signs of deafblindness because they lack the training on how to identify the risk factors. This can lead to misidentification, for example, the person appears to withdraw, be confused, and does not appear to remember what was said. These signs may be perceived as dementia but may in fact be deafblindness[ii]. Misidentification and/or poorly conducted assessments can significantly affect the interventions to treat underlying health conditions, rehabilitate, plan for tailored supports, identify communication needs and approaches, and ensure independence and full participation in society of persons with deafblindness[iii].
Even when deafblindness has been identified, many individuals do not know how to adjust, and families often do not know how to support them. The process for identification, assessment, and referral can be a long, drawn-out process with poor communication for persons with risk factors and their families. Because deafblindness is a low-incidence disability, families often feel isolated because information, advice, and specialist interventions are needed for both the person with deafblindness and their support network.
According to respondents of WFDB’s survey, many countries do not have a comprehensive system for identification, assessment, and referral for persons with deafblindness across all age groups and geographic regions. Whether this is due to a lack of awareness, technical expertise, or investment, the results lead to social isolation and higher dependence of persons with deafblindness on others. In addition, where deafblindness is not legally recognised, persons with deafblindness may be misidentified and may not obtain the right supports. For example, individuals may be required to obtain two medical certificates – one for vision loss and one for hearing loss – which is expensive and does not adequately describe their disability[iv]. Where identification, assessment, and referral services do exist, they are often centrally located (e.g., in the capitol or large cities, making it inaccessible to people who live far away or in rural areas). For example, Sense International noted that they had to pay to move the team that conducted these services, Educational Support, Resource, and Assessment Services (ESRAC) based in Dar Es Salaam, to other parts of Tanzania to support these services that formed a critical element in a recent education programme that they delivered.
[i] 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. 32.
[ii] Mortensen, Ole E., When vision and hearing fail, www.sufo.dk, February 2021.
[iii] Nordic Welfare Centre, Revealing hidden potentials: Assessing cognition in individuals with congenital deafblindness, https://nordicwelfare.org/publikationer/hidden-potentials/, August 2020.
[iv] 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. 9.
Identification, assessment, and referral services should include early identification and intervention for infants and young children, as it is often difficult for them to make significant progress in their development if deafblindness is not addressed until school age. This process involves:
These services for infants and young children may be more cost-effective if provided within existing health and rehabilitation services and alongside interventions for other disabilities, such as single sensory impairments.
Identification, assessment, and referral services in older adults are similar. Health checks and questionnaires are a good starting point for identifying deafblindness in adults. Health centres, families, caregivers, and targeted recreational facilities, such as libraries, provide opportunities to raise awareness and disseminate risk factor tools. Risk factor tools, such as a question guide or simple screening tool for caregivers and health care staff, can help to identify those at risk of deafblindness or single sensory loss that requires further assessment and referrals[ii]. Whether for children or adults, these services may also require:
In addition, assessments must always be a flexible, holistic process based on the latest research and experience within the field of deafblindness[iv]. For identification screenings and assessments for deafblindness, a range of functional capacities should be included (i.e., hearing, vision, cognition, mobility, and orientation). Professional guidelines ensure consistent professional standards are met and help to prevent assumptions made by professionals) (e.g., if a child cannot hear and see, it does not mean that they have low cognitive potential)[v].
In low-resource countries where these services do not exist, piloting of identification, assessment, and referral services tailored to the context can form a starting point. For example, a pilot programme can help to build knowledge of medical professionals on deafblindness, establish community access points for service provision, and initiate procurement of the necessary equipment to undertake assessments, while tapping into the existing government-supported health services[vi].
To overcome the challenges of centralised or limited services for identification, assessment, and referral, pilot programmes may be initiated in other regions. Data analysis from pilot programmes can be used as evidence to highlight the impact of such services and influence local government development plans to ensure services are delivered locally in health centres and clinics[vii].
[i] Ibid., p. 32
[ii] Mortensen, Ole E., When vision and hearing fail, www.sufo.dk, February 2021.
[iii] Sense International, End of Project Early Intervention Services for Infants with Sensory Impairments in Kenya and Uganda, July 2019, p. 64-70.
[iv] Weber, Ines, Assessment of the Functional Hearing of Children with Deafblindness, June 2020.
[v] Nordic Welfare Centre, Revealing hidden potentials: Assessing cognition in individuals with congenital deafblindness, https://nordicwelfare.org/publikationer/hidden-potentials/, August 2020.
[vi] Sense International, End of Project Early Intervention Services for Infants with Sensory Impairments in Kenya and Uganda, July 2019, p. 64-70.
[vii] Sense International, A Case for the Adoption of the Screening and EI Model for CWDB as a Priority in the Wakiso District Local Government Development Plan, 2020, p. 19-22.
Governments
OPDs and NGOs
Donors and Research Institutes