Deafblind Scotland's Election Manifesto 2026

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Deafblind Scotland's Election Manifesto 2026

Deafblind Scotland is the Scottish authority on Deafblindness and the only

national Charity supporting people who live with this condition. There are

around 34,000 people living with Deafblindness in Scotland; their condition is at

a level where one sense can no longer compensate for another. Most people

acquire both sensory losses or their second sensory loss in adulthood and, for

many, this is in later years, such as with age-related hearing loss or conditions

like Macular Degeneration and Glaucoma. One in ten of our members live with

Usher Syndrome, a condition first described by Scottish Ophthalmologist

Charles Usher. This genetic condition means that children are born either Deaf or

hard of hearing and then go on to acquire Retinitis Pigmentosa, mainly in

adulthood.

After years of campaigning, in 2025 the Scottish Government agreed to

recognise Deafblindness as a distinct condition and to adopt the Nordic

Definition. The Nordic definition 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)

This formal Ministerial recognition of Deafblindness now brings Scotland into

line with many other countries, including the other nations of the United

Kingdom and international bodies such as the United Nations and the World

Health Organisation. We would not have achieved this without the support of

many Scottish MSPs. Following this significant and, for many deafblind people,

potentially life changing moment, and as the next Government forms, we now

ask for further support from MSPs. We ask them to ensure that those living with

this low incidence but high impact condition is identified at the earliest point

and that specialist support is available wherever they live in the country.

Specifically, we call on the incoming Government and MSPs to:

Recognise Guide Communication as a Specialist Service - Upgrade the role of

Guide Communication to that of a registered Communication/language

professional with pay that recognises this expert role.

Currently: Guide Communicators are paid £12.60 an hour as registered Social

Care Workers, which does not take account of specialist training requiring 6-7

years of study.

Adopt a National Commissioning Model for Deafblind Services – Deafblind

Scotland is the only organisation providing Deafblind rehabilitation, self-

management, mental wellbeing and specialist Guide Communicator services for

this low incidence but highly complex condition.

Currently: Deafblind Scotland is required to tender across individual local

authority areas creating variable hourly rates, a substantial administrative

burden and an inability to provide services in areas with less dense populations.

Create a Deafblind Care and Support Pathway - Put in place Care and Support

Pathways that ensure that people transitioning to Deafblindness are identified

and provided with early intervention services through this significant change

and have specialist support to adapt to life thereafter, including access to

genetic counselling.

Currently: People who are transitioning to Deafblindness are often not

identified at a stage where the provision of rehabilitation and self-management

support such as long cane training and specialist Deafblind communication

skills would have the biggest impact on levels of independence. Many transition

to a second sensory loss without support often describing this as ‘traumatic’.

Fund a Deafblind Link Worker – This would enable Deafblind Scotland to create a

specialist link worker post that can work peripatetically around the country

supporting local assessment processes. This worker could provide this expert

support and training in a range of settings, including education and employment,

in addition to Health and Social Care and social welfare services.

Currently: Deafblind Scotland fundraises to enable us to provide Deafblind

Awareness and Equality training to those professionals that are the gateway to

support, including Self-directed Support and Adult Disability Payments. However,

due to the low incidence of this condition many professionals become de-skilled,

and the volume of training required to reach every professional is beyond the

capacity of a small charity.

Develop an Usher Syndrome Early Intervention Service - this should include a

specialist worker that can support families across Scotland from genetic testing

onwards. They would provide a range of information and support to enable

families to adjust and children to acquire skills they may require when they

transition to Deafblindness (BSL, Braille, Touch-typing).

Currently: Access to information on Usher Syndrome is sparse in Scotland and

practice in supporting genetic testing is variable across the country. Even when

children are identified through genetic testing there is little specialist practical

and emotional support for families in Scotland. Other UK nations have access to

the charity UsherKids, which is beginning to build a support network and

resources for families, but a similar support structure does not currently exist in

Scotland. Incidence levels in Scotland are not fully known but will be low with

around 200 children and young people aged 0-25 years living with this condition.

Therefore, a small investment in an Usher Syndrome service could have a big

effect on families that live with this rare but impactful condition.

Build Pathways to acquire specialist Deafblind Communication Skills – There

needs to be provision of support for BSL acquisition in early years education

and within schools. This requires investment in training a small number of the

proposed regional Teachers of Deaf children and young people and Teachers of

Visually Impaired children and young people as Deafblind specialists. Due to the

small incidence of Deafblindness in childhood it would not be cost effective to

train all ToD and ToVI in Deafblindness. However, all should be provided with

Deafblind Awareness training and access to advisory support and guidance such

as through more specialist regional Teaching experts. Rolling out of the BSL Café

Model as recommended in the BSL National Plan (2023-2029) would support

acquisition of specialist Deafblind communication skills for the larger number of

people who acquire Deafblindness in adulthood.

Currently: There are limited opportunities for adults to acquire specialist

Deafblind communication skills (BSL, Visual Frame BSL, Deafblind Manual, Pro-

tactile communication, Braille). For children the BSL National Plan and the

Education (Scotland) Bill is promoting access to BSL as a learner and as a

medium for learning. This needs to also include Deafblind forms of

communication for children growing up with conditions such as Usher and

Charge Syndrome, including access to Deafblind specialist Teachers of Deaf

children and young people.