Defining Deafblindness

Will you and your organisation support this momentous moment for deafblind people in Scotland?

By signing the declaration you are adding you/your organisation’s support calling on the Scottish Government to formally recognise deafblindness as a distinct disability in Scotland.


Defining Deafblindness Communications Pack


Towards a Scottish Declaration on Deafblindness

We hereby call for the Scottish Government to recognise deafblindness as a distinct condition and specialist disability in Scotland.

Currently, Scotland lacks a legal or formally recognised definition for deafblindness, a crucial step toward identifying and diagnosing dual sensory loss at the earliest point, and addressing the unique challenges faced by the deafblind community. This can lead to significant inequalities in relation to access to education, employment, healthcare, and public and social services and can have a negative influence on a person’s cultural and emotional wellbeing. The impact of this condition can be devastating resulting in profound levels of social isolation and resulting loneliness. Addressing this demands specialist interdisciplinary approaches and skilled intervention, with a particular focus on early identification and transitional support.

Deafblindness can be considered as a spectrum and within this context the age of onset of the condition, severity of the impairment and underlying co-morbidities will contribute to an individual’s ability to communicate, receive information, and orientate within an environment. Often, in terms of accessibility, reasonable adjustments are afforded for either hearing or visual loss, but rarely both. Without support of skilled communication partners, people with deafblindness are at significant risk of isolation and social withdrawal, with compounding and ongoing risks to health, wellbeing, and human rights.

This declaration calls for the formal adoption of the Nordic definition of deafblindness to pave the way for a more inclusive and equitable future for deafblind people and to fortify the broader landscape of disability rights in Scotland.

The World Health Organisation[1] (WHO), alongside other significant health systems and countries, have adopted the Nordic definition of deafblindness which states:

Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability.

To varying degrees, deafblindness limits activities and restricts full participation in society. It affects social life, communication, access to information, orientation, and the ability to move around freely and safely. To help compensate for the combined vision and hearing impairment, the tactile sense becomes especially important.

(nordicwelfare.org)

The full Nordic Definition on Deafblindness can be viewed here: https://nordicwelfare.org/wp-content/uploads/2018/03/nordic-definition-of-deafblindness.pdf

Current research[2] estimates more than 30,000 people live with the condition in Scotland, and this number is set to rise in line with an aging population. Adopting this definition will enable Scotland to uphold and enshrine the human rights of people living with a dual sensory loss now and in the future.

Recognition of Rights

People living with deafblindness possess inherent human rights. They have the right to live, learn, work, and engage in social activities in an environment that respects their unique needs and promotes their autonomy.

Current legislation that may have bearing on the lives of people living with deafblindness is as follows and is not an exhaustive list. (For further information including a summary and section of each legislation, please see appendix 1a):

  • The Universal Declaration of Human Rights (United Nations) (1948)
  • The Human Rights Act (1998)
  • The Convention on the Rights of Persons with Disabilities (United Nations) (2006) (UNCRPD).
  • The United Nations Convention on the Rights of the Child (UNCRC (United Nations Convention on the Rights of the Child))
  • The Equality Act (2010)
  • The British Sign Language (BSL) (Scotland) Act (2015)
  • The Patient Rights (Scotland) Act (2011)
  • The Social Care (Self Directed Support) (Scotland) Act (2013)
  • The EU Written Declaration on Deafblindness (2004)

Through the act of countersigning this Declaration we ask you to join us in calling for the adoption of a Scottish definition of Deafblindness and protection of these existing rights through a collective effort to uphold the following six commitments.

Article 1: Inclusive Education

Deafblind children and adults have the right to access quality, accessible and inclusive education, and opportunities to learn and develop. We shall work to create an educational environment that accommodates diverse learning styles and communication methods. We shall support specific teacher competencies for deafblind learners including haptic approaches using the bodily-tactile modality and towards the development of dynamic and person-centred approaches within the dialogical perspective[3].

Article 2: Access to Information and Communication

We commit to ensuring that deafblind individuals have equal access to information and communication. This includes the promotion of accessible technologies, tactile communication methods, sign language interpreters, guide communicators, competent communication partners, intervenors and other appropriate resources that enable deafblind people to express themselves and engage with the world around them and those in it.

Article 3: Support Services, Habilitation and Rehabilitation

We pledge to provide comprehensive and specialised support services to assist deafblind individuals to achieve their full potential. This includes access to assistive devices, augmentative and alternative communication methods, orientation and mobility training, vocational rehabilitation, counselling, and other essential services that enhance independence and quality of life.

Article 4: Participation in Decision-Making

We commit to ensuring that deafblind people are able engage in meaningful participation over decisions that affect their lives. We shall work closely with expert organisations to create inclusive platforms for consultation, representation, and collaboration, allowing deafblind people to contribute to policies, services and programmes that address their needs and aspirations.

Article 5: Public Awareness and Advocacy

We will raise awareness and promote understanding of deafblindness across Scotland via the Scottish Government’s See Hear strategy and through education and policy initiatives. We will aim to combat stigma, dispel misconceptions, and foster an inclusive society that champions the unique contributions of deafblind individuals.

Article 6: Partnerships and Collaboration

We recognise that addressing the challenges of deafblindness requires the collective effort of governmental bodies, non-governmental organisations, the third sector, academic institutions, businesses, and the wider community. We pledge to collaborate, share resources, and coordinate actions to ensure a comprehensive and sustainable approach to supporting the deafblind community in Scotland.

Signatories:

We the countersigned ask the Scottish Government to undertake to formally adopt the Nordic definition of deafblindness in Scotland, creating a framework within which the Human Rights, agency and potential of deafblind people are upheld and championed.

Signed: Click Here...

Full document with appendices available here.


Next Steps:

We ask The Scottish Government to work with expert organisations and individuals to take these first steps to creating a more equal life for deafblind people.

  1. Ratify and adopt the Nordic definition of Deafblindness with distinct provision outlined within the See Hear Strategy.
  2. Work with expert organisations to coproduce assessment, identification, and intervention pathways for people with congenital and acquired deafblindness, including Usher Syndrome.
  3. Ensure assessment for services are undertaken by clinicians and professionals competent in deafblindness through establishment of professional development pathways on deafblindness.
  4. Consequently, develop a centralised system of notification mirroring that of VINCYP (Visual Impairment Network for Children and Young People) and HINCYP (Hearing Impairment Network for Children and Young People).

[1] ICD-10 Code: H90.4 – Deafblindness.

[2] Kösters, N., McMenemy, A., and Johnson, C., 2022. Prevalence rates for those with dual sensory loss and dementia in Scotland. Datafakts Ltd., Research report.

https://eresearch.qmu.ac.uk/handle/20.500.12289/12653

[3] For further information on a dialogical perspective within education please see appendix 3.


Excerpt from Cross Party Group – Defining Deafblindness Paper

“As previously set out Scotland does not have a definition of deafblindness that is either agreed by clinicians or a social model definition of deafblindness that has legal support. In this absence those working with people who have a dual sensory loss tend to default to the Nordic definition of deafblindness as this has been adopted by the World Federation of Deafblindness and the World Health Organisation. This definition is based on the social model of disability. However, it is important to note that in the absence of an agreed clinical threshold we have not seen the development of clinical specialities such as can be seen in other areas of complex disability.”


Seen and Heard:  An outline of the need to define deafblindness as a unique disability within Scotland

Click on the download button to read the full report with recommendations for good first steps on the road to making this recognition a reality.