Persons with deafblindness have a right to an adequate standard of living for themselves and their families, including food, housing, water, clothing, and the continuous improvement of living conditions. This involves access to social protection schemes and poverty reduction programmes that are mainstream (e.g., public housing, retirement age pension, unemployment assistance, etc.) and disability-specific (e.g., assistance with disability-related expenses or extra cost of disability and respite care)^[i].

Based on WFDB’s research in 2018, households with persons with deafblindness in some countries were more likely to be in the bottom 40% in terms of socio-economic status compared to households with no members with disabilities^[ii]. Based on data from 36 countries in the MICS, children with deafblindness were 30% more likely to live in poverty compared to children without disabilities in upper middle-income countries. A household with a person with deafblindness affects the whole family, especially where there are limited or no community-based or social supports^[iii].

It requires a lot of time and money to care for children with deafblindness and in some cases it means employing somebody… to directly take care of the child if you are employed. In terms of medication, these children often need frequent medical check-ups, catering for medical bills, and transport. If the child is enrolled in school, it will require the caregiver to provide that child with communication and mobility (devices), or an interpreter-guide(/Deafblind interpreter), which escalates the cost. – Key informant from Sense International Uganda’s study on caring for a child with deafblindness^[iv]

In most low- and middle-income countries, social protection schemes tend to focus on basic poverty-related issues or being able to work and do not cover the extra costs related to disability^[v]. Extra costs of having deafblindness vary depending on individual needs and whether services are provided by the State, but some examples include:

• Assistive devices (e.g., glasses, magnifiers, Braille machines and supplies, hearing aids, red and white cane, etc.)

• Live assistance (e.g., interpreter-guides/Deafblind interpreters, personal assistants, private carers, private tutor / teaching assistant, childcare, family member serving as a carer and taking time off work, etc.)

• Accessible transportation

• Adaptations to the home

• Tuition at a private school and school meals, especially if public schools will not enrol a child with deafblindness

• Health and rehabilitation expenses (e.g., diagnosis, check-ups, screenings and assessments, tests, communication and rehabilitation services, medication, surgery, etc.)^[vi].

To receive social protection benefits to cover these costs, children and adults with deafblindness are usually required to provide proof of eligibility, including proof of identity and proof of disability. Data from 36 countries in the MICS showed that approximately half of young children with deafblindness aged 2-4 years had their birth officially registered compared to 61% of children with other disabilities and 73% of children without disabilities. This varied widely by region with 28% in Sub-Saharan Africa to 100% in North Africa and West Asia. Registration also varied by country income level, with almost all children with deafblindness registered in middle-income countries but only 26% registered in low-income countries. The research did not explore the reasons for unregistered births. For the full country data, see Table 5, Annex 1.

Lack of personal identification, such as birth certificates, creates a barrier for individuals and families in accessing social protection. In addition, if deafblindness is not legally recognised or not understood by health providers, their disability may not be accurately identified for social protection eligibility, which can affect the application of social protection supports. This often happens when deafblindness is not recognised and persons with deafblindness are forced to choose their disability identification between deaf or blind. In these instances, the social protection interventions are often tailored to the chosen group (e.g., free access to guiding services for the blind or entitlement to sign language interpretation for the deaf), which are insufficient for most persons with deafblindness. Disability identification can affect the types of social protection supports as well as the amount of money that certain groups are entitled to. For example, if deafblindness is recognised as a vulnerable group, they may have faster access to support in an emergency.

The analysis of the data from 36 countries in the MICS did not reveal a difference between children with deafblindness and children with other disabilities or no disabilities in terms of having both biological parents present in households. However, this data does not match the literature or WFDB’s or Sense International’s field experience. For example, a study in Uganda revealed that parental abandonment and single-parent households were often the result of conflict related to the identification of deafblindness in the child and blame for the disability attributed to mothers. The capacity of single-parent households with children with deafblindness to meet basic needs is significantly reduced due to the caring responsibilities^[vii]. More targeted research is needed to better understand the links between poverty and persons with deafblindness, including the prevalence and impact of deafblindness in single-parent households.

Where social protection measures are in place, respondents to WFDB’s survey noted that information on available schemes and guidance on eligibility requirements are often difficult to navigate.

^[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Article 28.

^[ii] 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. 18.

^[iii] Sense International Uganda, The Economic Impact of Caring for a Child with Deafblindness / Multi-Sensory Impairment, November 2019, p. 32.

^[iv] Ibid., p. 29-30.

^[v] 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. 19.

^[vi] Sense International Uganda, The Economic Impact of Caring for a Child with Deafblindness / Multi-Sensory Impairment, November 2019, p. 31-32.

^[vii] Ibid., p. 36.