When Advocacy Isn’t Accessible: Why Specialist Deafblind Advocacy Matters

Deafblindness is not simply deafness plus blindness

One of the most common misconceptions in commissioning is the assumption that services specialising in either hearing loss or sight loss will automatically possess the knowledge and skills required to support people who are deafblind.

While these organisations often provide valuable support within their areas of expertise, deafblindness is recognised as a distinct disability in its own right.

At Hi-Vis UK, we often use a simple analogy to explain this.

Imagine deafness as the colour blue and blindness as the colour yellow. When you combine blue and yellow, you do not end up with something that is a little bit blue and a little bit yellow. You create green – an entirely new colour.

The same principle applies to deafblindness.

The impact of combined sight and hearing loss is not simply the sum of two separate sensory impairments. The interaction between the two creates unique barriers to communication, access to information, mobility, independence and participation in society.

For example, strategies that work effectively for a person with hearing loss may rely heavily on visual information. Equally, approaches used to support someone with sight loss may depend on their ability to hear verbal instructions, environmental cues or spoken information. When both senses are affected, entirely different approaches may be required.

This distinction is recognised within the Care Act 2014 statutory guidance, which identifies deafblindness as a unique disability and requires local authorities to ensure specialist expertise is available when assessing deafblind individuals.

The same principle should apply to advocacy services.

An advocate may be highly skilled in generic advocacy, visual impairment or hearing loss. However, without an understanding of the unique impact of combined sensory loss, there is a risk that communication barriers remain unrecognised and that the person’s ability to participate fully in decisions affecting their life is compromised.

For commissioners, this raises an important question: not simply whether advocacy services are available, but whether they have access to the specialist knowledge required to support people who are deafblind effectively across all advocacy situations

Why specialist advocacy matters

For many deafblind people, the consequences of ineffective advocacy can be significant.

Important decisions about care, housing, safeguarding, health care and mental capacity may proceed without the individual fully understanding what is happening or being able to influence outcomes.

This is particularly concerning where there are safeguarding concerns, mental capacity issues or significant life-changing decisions.

An advocate should be amplifying the person’s voice.

Without the right skills and support, that voice can remain unheard.

A commissioning opportunity

Commissioners have a key role to play in addressing this issue.

This does not necessarily mean commissioning entirely separate advocacy services. However, it does mean ensuring contracts recognise sensory loss and include requirements for specialist knowledge, training, referral pathways and access to expert support when required.

Questions commissioners may wish to consider include:

• How will advocates communicate effectively with deafblind people?
• What specialist training do advocacy providers receive?
• How will providers identify when specialist input is required?
• What arrangements exist with specialist sensory loss organisations?
• How will outcomes for deafblind people be monitored?

By asking these questions at commissioning stage, local authorities can help ensure advocacy services are genuinely inclusive.