Combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 19 population-based surveys from low, middle and high-income countries), an academic literature review, surveys conducted amongst members and partners of WFDB and Sense International, and consultation with more than 75 women and men with deafblindness who took part in the Helen Keller World Conference in June 2018, this initial global report examines whether the needs of persons with deafblindness, as recognised in the Convention on the Rights of Persons with Disabilities (CRPD), are being met by governments across the world.

This report will be followed by several reports up to 2030 to monitor the progress being made to realise the rights of persons with deafblindness according to both the CRPD and Sustainable Development Goals (SDGs).

Despite a number of impressive achievements and the tireless advocacy work undertaken by organisations of persons with disabilities and their allies, the report finds that, overall, the issues faced by persons with deafblindness have largely been ignored. As a result, people with deafblindness are being ‘left behind’, contrary to the fundamental principle that underpins the SDGs.

Globally, a vicious circle exists, whereby a lack of awareness and a lack of recognition of persons with deafblindness as a distinct disability group have led to invisibility and consequently a failure of governments to recognise inclusion requirements. Due to the specific implications of their disability, persons with deafblindness face additional barriers and require specific support, in particular interpreter-guide services and tailored rehabilitation services, among others.

As these services are only available in a few countries, persons with deafblindness benefit little from development efforts, including those aimed at implementing the CRPD.

KEY FINDINGS

Previous estimates suggest that around 0.2% of the world’s population are living with deafblindness. Analysis of prevalence data in the report found that this figures ignores a vast number of people with milder forms of deafblindness who experience barriers to participation and discrimination. As such, 2% is a more accurate figure, reflecting the diversity of persons with deafblindness. Within the population of persons with deafblindness:

  • While deafblindness is more common among older age groups, deafblindness among children and young adults has a more pronounced impact on daily living, for example in terms of barriers to education, employment and social participation, and a higher risk of poverty.
  • They are ten times less likely to be employed than non-disabled people, and 30% less likely to be employed than persons with other types of disabilities.
  • Children with deafblindness are 17 times less likely to be in school than non-disabled children, and twice less likely to be in school compared to children with other types of disabilities.
  • Families and households that include persons with deafblindness are more likely to be in the bottom 40% in terms of socio-economic status compared to households that include no members with disabilities and households with people who have other disabilities.
  • Women with deafblindness experience increased restrictions in terms of participating in a wide range of activities.

In addition:

Between 20% and 75% of persons with deafblindness have additional impairments.

  • There is a high prevalence of depression among persons with deafblindness, but low access to mental health services.
  • Children with deafblindness are less likely to live with both parents.
  • Persons with deafblindness are less likely to be married.
  • Persons with deafblindness reported a low quality of life and restrictions in participating across a wide-range of activities.
  • Persons with deafblindness aged over 50 are twice as likely to be socially isolated compared to those without a combined sight and hearing impairment.

Information provided by WFDB members and Sense International teams and partners suggest an inadequate policy response from governments:

  • There is an overall lack of awareness and recognition of persons with deafblindness as a distinct disability group. It is often wrongly assumed that people only require at best a combination of the services that exist either for blind or deaf people. This, however, ignores the specific barriers and communication requirements of each person with deafblindness.
  • While the situation is exacerbated in lower-income countries, few countries have developed effective publicly funded support services for persons with deafblindness, especially interpreter-guide services. A lack of support has a negative impact on a person’s social and economic situation, their political participation, and contributes to a high incidence of isolation.
  • Employment policies and services do not adequately support persons with deafblindness.
  • Education provision is generally inadequate, with an overreliance on special education settings and little attention to children with deafblindness specific requirements in inclusive education policies and processes as well.
  • Whilst access to health is better for adults with deafblindness, with the distinct exception of sexual and reproductive health services, it was noted that communication barriers and the negative attitudes of healthcare staff affect the care that people receive. In many countries, healthcare staff do not have the requisite knowledge or training on the causes of deafblindness or the specific communication requirements of individuals.
  • Few countries have developed adequate early detection and intervention services for children with deafblindness, which impacts on their development and family relationships.
  • There are large discrepancies between high and low-income countries in terms of access to social protection. In most countries, existing support does not cover the extra cost of disability (this cost was estimated to be the highest among persons with disabilities in South Africa).

Case studies provide insights into innovative practices in health, education, employment and personal experiences, and demonstrate the pathways required to ensure the full and effective participation of persons with deafblindness.

RECOMMENDATIONS

The evidence contained in the report confirms that persons with deafblindness are left behind in terms of disability inclusion and development efforts. In addition to the common demands of the disability movement with regards to accessibility, non-discrimination, participation and inclusion, WFDB members have identified the following recommendations to ensure that persons with deafblindness are able to contribute to and benefit from ongoing and future efforts to achieve the SDGs and implement the CRPD:

Pre-conditions for inclusion

  • Universal and national recognition of deafblindness as a distinct disability in law and practice.
  • Development, in consultation with persons with deafblindness and their organisations, of required support and deafblind interpretation services, in particular interpreter-guides, and adequate public funding to ensure support in education, work and community life.
  • Ensure that organisations of persons with deafblindness are considered as a distinct disability group and are included as such in all consultation with persons with disabilities.
  • Involve persons with deafblindness and their organisations in awareness raising and inclusion-related programmes, serving as role models, mentors and peer support.
  • Adopt, in consultation with persons with deafblindness and their organisations, a consistent definition and measurement of deafblindness, and collect, disaggregate and analyse data, to assess and monitor situation of persons with deafblindness, including through relevant analyses of national datasets using the Washington Group Short Set questions or other methods.
  • Conduct additional research on the issues facing persons with deafblindness, including health status and access to healthcare, social participation and wellbeing, quality of work and education, causes, and age of onset. Undertake impact evaluations of interventions designed to improve inclusion.

Social protection

  • Disability determination and eligibility processes should consider persons with deafblindness as a distinct disability group.
  • Disability schemes should take into consideration the significant extra cost of deafblindness, including assistive technology, personal assistance and interpreter-guide services.

Education

  • Ensure that the requirements of persons with deafblindness are taken into account in inclusive education laws, policies and programmes, and efforts are made to adapt curricula, train teachers and provide support to students.
  • Ensure the availability of resource centres that support mainstream schools, children with deafblindness and their families.
  • Ensure the adequate provision of interpreter-guides.

Health

  • Provide adequate training to healthcare staff both on the causes of deafblindness and the specific communication requirements of persons with deafblindness.
  • Ensure access to adequate sexual and reproductive health services, with an emphasis on women and girls with deafblindness.
  • Ensure the provision of adequate early detection and intervention services, in partnership with education providers.
  • Ensure the adequate provision of interpreter-guides.

Work and employment

  • Ensure that persons with deafblindness are adequately included in employment-related laws, policies and programmes.
  • Ensure the adequate provision of interpreter-guides for work and employment.

Political participation

  • Ensure that the right to vote is granted to all persons with deafblindness.
  • Take into consideration the accessibility requirements of persons with deafblindness with regards to election campaigns, voting materials and polling stations.
  • Support the engagement of persons with deafblindness in political and public life.
  • Support organisations of persons with deafblindness and involve them as a distinct disability group in all consultations with disability movements.

Social participation

  • Provide early intervention and counselling services for families of children with deafblindness.
  • Implement community-based intervention programmes to facilitate the social participation and inclusion of persons with deafblindness.
  • Ensure the adequate provision of interpreter-guides.

As this report concludes, persons with deafblindness are still left behind in all countries of the world. The initial steps to amend this and bridge the gaps, as this report shows, are:

  • To establish a universal acknowledgement and recognition of deafblindness as a unique and distinct disability, with its own specific challenges, barriers, support and inclusion requirements.
  • Establish publicly funded deafblind interpretation services, in particular interpreter-guides.
  • Provide the necessary funding for further research and strengthening of the advocacy work, including funding of the tools and technical support needed.

Fulfilling these steps will contribute to lifting Women and men, girls and boys with deafblindness to a position where they may be able to engage, advocate and contribute on more equal terms paving the way towards full and effective participation and inclusion.

For more information on the global report on deafblindness please contact: globalreport@wfdb.eu

For more information on the World Federation of the Deafblind please visit: www.wfdb.eu

For more information on Sense International please visit: https://senseinternational.org.uk