Identification, Assessment
and Referral

Page Content

The first step for persons with deafblindness in accessing services includes:

  • Identification of their disability, usually through screening, a risk factor questionnaire, or health checks
  • Assessment of the condition and individual functioning through tests and comprehensive evaluations to get a full picture
  • Referrals for additional testing, health and rehabilitation specialists, information on deafblindness, advice on how to make adjustments, and support services .

 

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.

Good Practices

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:

  • Screening for vision and hearing, which may involve a risk-factor questionnaire
  • Testing of infants and children that are flagged for risks during screening
  •  Referrals to intervention services and specialists as early as possible to improve their development and independence, working in partnership with schools or child welfare systems with a multidisciplinary team, and developing an individualised plan for each child[i]. These referrals may include additional testing and rehabilitation services with for example, audiologists, optometrists, and other specialists. This should also include referrals to information on benefits, social protection, and information and advice offered to families.

 

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:

 

  • Screening for vision and hearing, which may involve a risk-factor questionnaire
  • Identification and assessment protocols
  • Training and sensitisation of health care staff to better recognise the risk factors
  • Sensitisation training, information resources, and advice for family members
  • Good communication for people at risk and families throughout the process for identification, assessment, and referral
  • Awareness- raising in the community on deafblindness screening
  • Referral pathways for further assessments for at-risk individuals
  • Procurement of medical equipment used in assessments and essential medicines
  • Access to specialists (e.g., occupational therapists, audiologists, ophthalmologists, etc.)
  • A system for collecting data
  • Centralised, tailored, and accessible information resources on deafblindness for practitioners, families, government officials, and other key stakeholders
  • Coordination between government ministries and departments (e.g., health, education, etc.)
  • Coordination on other disabilities (e.g., single sensory impairments)
  • Coordination with rehabilitation services
  • Continuity of funding[iii].

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.

Recommendations

Governments

  • Ensure that identification, assessment, and referral systems for persons with disabilities include services for persons with deafblindness in all age groups and integrate them into existing government-supported health services
  • Establish, for example through pilots, early identification and intervention services for infants and young children with deafblindness and identification and assessment services for older persons to identify individuals who are at risk
  • Work with deafblindness professionals and persons with deafblindness to establish protocols and professional standards and guidelines for identification, assessment, and referral services
  • Incorporate identification, assessment, and referral services into local government development plans to initiate these services across all regions, especially in decentralised systems
  • Increase training for health care professionals on the risk factors for deafblindness so that they are better equipped to identify it and ensure that there are systems for assessing risk of deafblindness built into health checks

 

OPDs and NGOs

  • Build alliances with persons with deafblindness, health care professionals, including specialists, and families to build capacities on the requirements of persons with deafblindness for identification, assessment, and referral services

 

Donors and Research Institutes

  • Ensure that funded programmes, including pilot programmes, and research on the identification, assessment, and referral services of persons with disabilities include persons with deafblindness
Ir al contenido