Meeting of the Parliament [Draft]

Meeting date: Wednesday, February 7, 2024

Official Report 966KB pdf

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Deafblindness

The final item of business this evening is a members’ business debate on motion S6M-11700, in the name of Rona Mackay, on the definition of deafblindness. The debate will be concluded without any questions being put. I invite members who wish to participate to press their request-to-speak buttons now or as soon as possible.

Motion debated,

That the Parliament notes the process towards formal recognition in Scotland of deafblindness as a distinct disability; commends the work of the Cross-Party Group (CPG) on Deafness, whose members have been working tirelessly towards the definition of deafblindness becoming adopted in Scotland, which, it understands, is already the case elsewhere in the UK and within the European Parliament; notes the view that this is a crucial step towards identifying, diagnosing and supporting people with dual sensory loss who live in Scotland, including in the Strathkelvin and Bearsden constituency, and enabling the unique challenges that they face to be addressed; further notes what it sees as the valuable recommendations of Deafblind Scotland, having worked with partners in the CPG to develop a Declaration on Deafblindness; notes the calls from the group for the Scottish Parliament to recognise this low-incidence but high-impact disability in Scotland, and the formal adoption of the Nordic definition of deafblindness; understands that the World Health Organization (WHO) is one of several organisations that has already adopted the definition of deafblindness, and applauds Deafblind Scotland, in Lenzie, and its members, staff and volunteers, for working to ensure that lived experience plays an integral part in informing policy, including the formal recognition of the term deafblindness and its definition.

17:10  

It is an absolute pleasure to lead this debate on recognising deafblindness as a distinct condition and specialist disability in Scotland. I am privileged to have Deafblind Scotland’s headquarters in Lenzie, in my constituency—in fact, it is about one mile from my house. It is a fantastic organisation, with a caring professional team led by chief executive Isabella Goldie. I am delighted to say that Isabella and many of her team and service users have made the journey from all over Scotland to be here in the chamber, and I welcome them warmly to the public gallery.

Last summer, I had the pleasure of opening a sensory path leading to the organisation’s state-of-the-art building, and plans are under way to construct a sensory garden. The innovation and caring never stop at Deafblind Scotland, and I congratulate it at every level.

Few of us can even imagine experiencing the loss of one sense, never mind two. Since being elected in 2016, I have met inspirational people at Deafblind Scotland who have lost those senses—some from birth and others gradually. Some are blind, some are deaf, and some are deaf and blind. They are brave and strong and do not complain. However, I believe that we, as a Government, have a responsibility to make life more bearable for them in whatever way we can. Tonight, I will mention a few things that we can and should do.

Currently, Scotland lacks a legal definition for deafblindness, which would be a crucial step towards recognising and diagnosing dual sensory loss at the earliest point and addressing the unique challenges that are faced by the deafblind community. Lack of a definition can lead to significant inequalities in access to education, employment, healthcare and public and social services, and it can have a hugely negative effect on a person’s cultural and emotional wellbeing.

The impact of the condition can be devastating, resulting in profound levels of social isolation and resulting loneliness. Addressing that demands specialist interdisciplinary approaches and skilled early intervention when it comes to diagnosis. The World Health Organization, alongside other significant health systems in countries, has adopted the Nordic definition of deafblindness, part of 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.”

I believe that Scotland should formally adopt the Nordic definition of deafblindness to pave the way for a more inclusive and equitable future for deafblind people. It would enable Scotland to uphold and enshrine the human rights of people who are living with dual sensory loss now and in future. 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.

I congratulate the cross-party group on deafness on all that it has done in working towards Scotland adopting the Nordic definition of deafblindness. That is a perfect example of a cross-party group working to achieve something that would have a lifelong benefit for the more than 34,000 people who it is estimated live with the condition in Scotland alone. Sadly, that number is set to rise in line with an ageing population.

I will highlight Julie’s case, with her permission. Julie lives with Usher syndrome and was diagnosed as dual sensory impaired later in life. She is a teacher working and living in Orkney and she is also a young mother. Deafblind Scotland supports her remotely. She said:

“I’ve experienced how essential it is for deafblind people to receive specific support. I grew up as a deaf person but I started losing my eyesight in my late teens.

Suddenly I couldn’t use my eyesight to help me manage my deafness and when I was given advice for my sight loss, the advice relied on me being able to hear well.? I felt like I was on my own, trying to learn how to cope, work, and lead a fulfilling life.

With this declaration, we can develop a world-class system that integrates knowledge of both impairments for tailored, useful support. This will reduce isolation and increase life satisfaction for so many of us.”

Nothing that I could say here tonight could illustrate more powerfully than Julie’s story why deafblindness should be recognised as a distinct disability.

Another issue that I have raised several times in the chamber is that of free travel for deafblind companions. There is no national standard fare structure for communicators to accompany deafblind passengers on trains, which makes travel impossible. That is another basic human right that most of us take for granted. I understand that travel is free on some routes but chargeable on others, which leads to geographical inequalities and confusion among rail staff. Free travel for companions would open up a whole new world of freedom for deafblind people. I have had encouraging replies from ministers when I have raised the matter previously, and I hope that it is something that we could deliver sooner rather than later.

Communicators open up a whole new world, acting as the eyes and ears of a deafblind person. Theirs is a highly skilled role that involves many years of training. Sadly, however, the remuneration is poor, which makes recruitment very difficult. I know that finances are tighter than ever these days, but I hope that the issue can be addressed in future budgetary planning in social care.

I hope that tonight’s debate shines a light on some of the things that we could do to help our deafblind community. Let the debate be a turning point in doing that by recognising and supporting this distinct disability. It is the very least that we can do for members of the deafblind community.

I look forward to hearing members’ contributions from across the chamber. I again thank the Deafblind Scotland team and users for coming to the public gallery tonight.

17:16  

I am delighted to take part in this debate to highlight the progress that has been made towards the formal recognition in Scotland of deafblindness as a distinct disability. I thank Rona Mackay for using her members’ business allocation to discuss this important issue. I, too, welcome the visitors to the public gallery this evening.

For me, one of the best perks about being an MSP is that we can get involved in some varied and interesting groups, where we are given an opportunity to learn from experts in their field. Hopefully, we can then stand up in the chamber to promote causes, speak from the heart, push the debate and really make a difference to people’s lives. This is exactly one of those situations, and I sincerely hope that we can use the debate to do just that.

As a member of the cross-party group on deafness, I can add first-hand evidence on all the hard work that has been done by the members who attend the group. In particular, the sub-group has put in a tremendous effort to ensure that the definition of deafblindness is adopted in Scotland. I would love to mention everyone by name, but I have only four minutes. In any case, they did a fantastic job.

After a quick Google search, I stumbled upon the following interesting points: the first time that deafblindness was documented was back in the records of the crusades; the history of deafblind education began in the early 1900s in Paris, with a young lady named Victorine Morriseau; Laura Bridgman was the first deafblind person to be educated in the United States, back in 1837; and the United Kingdom’s Department of Health recognised a definition of deafblindness back in 1995.

Given the centuries that have passed, I can only assume that many people will feel frustrated that, here in Scotland, we still have progress to make to formally recognise the definition. I hope that we are on the last lap of that.

I add my request to that of Deafblind Scotland and the CPG on deafness in asking the Scottish Government to recognise deafblindness as a distinct condition and a specialist disability here in Scotland, reinforcing the position of the European Parliament, which is highlighted in the motion, that adopting the definition

“is a crucial step towards identifying, diagnosing and supporting people with dual sensory loss who live in Scotland”,

and in encouraging the Government to take strident steps to address the unique challenges that are faced by the deafblind community.

Current research estimates that more than 30,000 people in Scotland live with the condition, and that number is set to rise in line with an ageing population, as Ms Mackay mentioned.

I mentioned the perks of learning something new, and being a member of the cross-party group on deafness has highlighted another issue for me: the links between dual sensory loss and dementia. Considering the number of people who are living with the condition and the aforementioned increase, which will continue as a result of our ageing population, it would be remiss of me not to highlight that connection.

I know that the cross-party group on deafness is already working on the issue. Steps have been taken to formally recognise the deafblindness definition, and the resulting ability to fully diagnose the condition will, it is hoped, pave the way towards a comprehensive screening programme. Not only will early intervention for dual sensory loss have benefits by ensuring that proper support is provided to enhance the lives of people who are living with deafblindness, but it can modify the risk of dementia in later life, and I urge the Scottish Government to engage with the CPG on deafness on that topic.

In conclusion, adopting the definition will enable Scotland to uphold and enshrine the human rights of people who are living with dual sensory loss, now and in the future.

17:21  

I congratulate Rona Mackay on bringing this important debate to the chamber. As convener of the cross-party group on visual impairment, I recognise how challenging dual sensory loss can be for people, as that has been raised at some of our CPG meetings in the past. It has also been brought to my attention by a constituent with dual sensory loss; she made me aware of the Nordic definition of deafblindness. I have since set up a meeting with Deafblind Scotland’s chief executive, Isabella Goldie, to discuss that in more detail. I believe that she and others who are involved in the work are in the public gallery this evening, and I pay tribute to them and welcome them to the Scottish Parliament.

As per the motion before us, it is clear to see why Scotland needs to adopt a formal definition of deafblindness. First and foremost, that would help us to identify, diagnose and, ultimately, better support people in Scotland with dual sensory loss. Dual sensory loss often occurs over time, which means that the lack of joined-up services can be problematic. For example, if people who are deaf and use British Sign Language develop age-related conditions, they may lose their ability to communicate in their first, and often their only, language. Had earlier support been provided, it would have allowed for tactile communication to be taught. Equally, people with sight loss who lose their hearing can become isolated, with limited avenues for communication.

That is why I support the adoption of the Nordic definition of deafblindness in Scotland, especially as that has already happened elsewhere in the United Kingdom and in the European Union. It is worth noting that the Nordic countries, after adopting that definition, went on to deliver better services and earlier identification of those who are at risk of a second sensory loss. Scotland can, therefore, learn from other nations about how best to develop care pathways for those with, or at risk of developing, deafblindness.

That is important, as I am told that, apart from Deafblind Scotland, only a few small organisations offer specialist services to people with dual sensory loss. Some will argue that the issue is not a priority, given the low incidence rate of that disability. However, the consequences of not providing the right support can be catastrophic for people and for their families, which is why it is crucial to ensure that the right services are in place. That point is reinforced by the fact that Deafblind Scotland has said that, all too often, it receives referrals for people who could have been provided with better emotional and practical support early in their transition to dual sensory loss.

I understand that the CPG on deafness has set up a short-life working group to look at concerns about dual sensory loss being identified in care home residents. I know that the cross-party group on visual impairment shares those concerns, along with concerns about the correlation with cognitive decline, which we discussed at our most recent meeting.

I believe that Scotland should formally recognise deafblindness so that research and services can be designed to better support people who are affected by dual sensory loss. Once again, I congratulate my colleague Rona Mackay on securing this hugely important members’ business debate.

17:24  

I, too, thank Rona Mackay for bringing this important debate to the chamber and, like other members, I welcome everyone in the gallery: the members of Deafblind Scotland, the interpreters and all the families. It is absolutely great to see them here.

As we have heard, deafblindness is a low-incidence but very high-impact disability. I believe that the work by the cross-party group, by members of the deafblind community and by the families involved means that we have made progress. However, this debate allows us to bring the issue to the chamber and, therefore, closer to the Minister for Social Care, Mental Wellbeing and Sport, who, I hope, will have some good news to bring us in her closing remarks. I know from speaking to members of Deafblind Scotland earlier today that the minister has spent some time with the community, and that is really welcome.

As we have heard, deafblindness is a combination of hearing and sight loss. A deafblind person will not necessarily be completely blind and/or deaf, as was explained to me this afternoon. However, both senses are affected enough to create difficulties in everyday life, in areas that we all take for granted such as communication, assessing information and simply getting around. As I discussed earlier, that is why it is important to get a definition for the disability.

In my time in the Scottish Parliament, much of our debating time has been taken up, quite rightly, by looking at how we ensure that human rights are enshrined in our everyday work, policies and laws. This members’ business debate is very much linked to that important aspect, as recognising that those with the disability have human rights will allow us to ensure that services are provided on that basis.

An estimated 31,000 deafblind people currently live in Scotland. As we have heard, however, Scotland lacks a legal definition of deafblindness. In my speaking notes, I have written, “Why is that important?” From talking to those in the community and to Deafblind Scotland, I know that it is important to that community to be recognised, so I want to bring that issue to the chamber—I did not have it in my notes, because I was looking at more clinical policy-based reasons, but it is important to the community that that is recognised.

In reading up on why we, in Parliament, might find that important with regard to legislation and regulation, I found that definition is a crucial step towards identifying and diagnosing people with dual sensory loss as early as possible so that support workers, clinicians and those in the social care network can address, at the earliest opportunity, the unique challenges that people face. That includes the provision of services that are, as we have heard today, unique to individuals in that community. If we miss that opportunity early on, it is a missed opportunity for that person and their life.

The cross-party group on deafness in the Scottish Parliament has been well supported. Rona Mackay has done a lot of good work, and Annabelle Ewing’s support in this area is well recognised.

I am running out of time, but I highlight that, from my experience of working with families, we need to understand and believe people who are receiving services and their families, because they know what we need to do to change lives. I hope that the minister has some good news for us today, because we need a definition to enable us to move on and make proper policy decisions and support commitments to people. That is important. I thank members for their contributions, and I thank those in the public gallery, too.

17:28  

I extend my thanks to Rona Mackay for bringing this incredibly important debate to the chamber, and I welcome people in the gallery.

I have raised my experience as the child of a deaf adult on several occasions in the chamber, and I have given my dad many mentions. However, my experience as a CODA—child of deaf adult—has deeply influenced my understanding of how we should approach disabilities, in particular ones that relate to hearing loss and communication.

The first meeting that I had with a deafblind person was more than 40 years ago. I was just a wee girl visiting Aberdeen deaf club with my dad. An elderly woman was sitting at a table, with a few people surrounding her. A person was crouching down beside her, holding the woman’s hand upwards in the palm of her hand. They were using the palm as though it were a drawing board or keyboard.

My dad placed his hand on my back to coax me forward to say, “Hello.” I looked back and signed to him, “What is she doing?” He signed to me, “She is deaf and blind, and that is how she communicates.”

I went over and waved “Hello” to the person doing the interpreting. They then signed to the deafblind woman that a young girl—Len’s daughter—was saying hello to her. She gave me a huge smile and tapped my hand.

What I did not understand then but have a profound understanding of now is the social isolation and loneliness that can accompany living with deafblindness, and how my dad’s small push on my back was a small but significant teaching to ensure that I was polite and introduced myself. It also encouraged me to have a go at communicating, regardless of my hesitations at my abilities, because everyone needs connection.

As an adult, I realise that that interaction gave me the opportunity to learn that deafblindness—even within our community of deaf people and CODAs—was a unique experience with distinct communication and interaction support needs.

Dual sensory impairment or loss, or the loss of sight and hearing to the point at which someone’s communication and ability to access information are impacted, is a distinct disability. Deafblind UK explains:

“If you mix the colours yellow and blue together, you get green. Green is completely different to both yellow and blue, it is a colour in its own right.

The same is true of deafblindness. If you have sight loss and hearing loss, then you are deafblind, which is a completely unique condition.”

It bears repeating that, across Scotland, about 30,000 people are living with deafblindness. I just did a wee search—that number is almost equivalent to the population of Dumfries. That is a significant amount of people.

Those people are a wide variety of ages, but deafblindness is more common in older people, such as the lady I met when I was little. As was mentioned, as a result of our ageing population, the number of people living with deafblindness is due to rise.

Some of those living with deafblindness will struggle to see and hear the television, while others might not be able to see or hear anything at all. There is a wide spectrum of dual sensory impairment or loss, which affects everyone differently.

Currently, as we have heard, Scotland lacks a legal definition for deafblindness. I believe that our agreeing on a definition would be a crucial step towards recognising and diagnosing dual sensory loss at the earliest point and addressing the unique challenges that the deafblind community faces.

The World Health Organization, alongside other significant health systems and countries, has adopted the Nordic definition of deafblindness, and the European Parliament recognised deafblindness as a unique disability 20 years ago. It is time that Scotland did the same, and I am grateful for Deafblind Scotland’s work in raising the issue and for the support of colleagues and other stakeholders on the cross-party group on deafness, of which I am a member.

I am grateful for the opportunity to speak in this debate, and it is particularly poignant to note that our speeches today could be being uniquely translated, as we deliver them, to those who relate to the deafblind experience. I hope that we have done them justice.

I am sure that you have. Well done, Ms Adam.

17:33  

First of all, I express my thanks to everyone who has attended the debate today, and I thank members for their insightful and interesting contributions. I particularly thank Rona Mackay for bringing the issue to the chamber. I, too, add my welcome to members of the Deafblind Scotland community. Welcome to the chamber—you have welcomed me several times to Lenzie, so it is an absolute pleasure to welcome you to my workplace.

It is clear that everyone in the chamber is familiar with sensory loss, whether that be through personal experience or as it has touched the lives of family members, neighbours or constituents. I applaud the hard work of the CPG on deafness and others who have contributed their time and energy on defining deafblindness as a distinct disability and on the planned launch of the declaration in June, for deafblind awareness week.

Many of the contributions today have included excellent examples of the work that is going on the length and breadth of Scotland to support people with sensory loss. Karen Adam absolutely brought to life—as she often does in these debates—the experience of our deafblind community and the impact of sensory loss on the ability to participate in all the things that we take for granted. I am in awe of the people who live with dual sensory loss, and I am keen to do what I can to support both Deafblind Scotland in the incredible work that it does and the community itself.

The Scottish Government supports the social model of disability, which is a way of viewing the world that has been developed by disabled people. It allows us to look at disability through a social lens. In general terms, the definition of “a disability” under section 6 of the Equality Act 2010 will already cover a person with deafblindness, if they have “a physical ... impairment” that

“has a substantial and long-term adverse effect on”

their

“ability to carry out normal day-to-day activities.”

There are protections in the 2010 act against discrimination on the grounds of someone’s disability. Section 20 requires that “reasonable adjustments” be made if certain conditions are met, and a failure to comply with that

“duty to make reasonable adjustments”

would also be discrimination under the act.

I am keen, therefore, to better understand where the definition has been adopted across the UK and what difference that has made in practice. There is the small issue of legislative competence in respect of the 2010 act, as that lies with Westminster rather than in Scotland. Nevertheless, I make a commitment today, in the chamber, to explore all the issues with Deafblind Scotland and with the interested members who have spoken in the debate. I recognise how important formal recognition is to the community, and I am keen to work with it to resolve the many challenges that I am certain that its members face.

As I said, I was delighted to visit Deafblind Scotland last year to learn about the work that it does to support deafblind people and to hear its insights about improving services at the national level. Creating a fairer, more equal society is a priority for this Government, and our ambitions to achieve equality for all go hand in hand with our ambitions for a strong economy.

I will take the opportunity to share some of the work that the Scottish Government has taken forward to support people with hearing loss, sight loss and dual sensory loss. We are supporting the right to dream project, which is a partnership between Deafblind Scotland and Visibility Scotland to pilot a training course that supports people who are living with a sensory impairment to better understand their human rights. We also support Deafblind Scotland with the BSL cafe project, which increases opportunities at an early stage to reach people who are at risk of a secondary sensory loss and support them to acquire further communication skills.

Our strategy “See Hear: A strategic framework for meeting the needs of people with a sensory impairment in Scotland” supports children and adults who have deafness, sight loss or dual sensory loss to access the support and social care that they need. The strategy, which was published in 2014 and jointly endorsed with the Convention of Scottish Local Authorities, is being implemented by local partnerships across Scotland. Since 2014, more than £5.5 million of funding has been allocated to support local implementation of the strategy and to help to drive progress. This year, a further £600,000 has been committed to invest in the on-going development and delivery of the strategy.

Since 2019-20, more than £11 million of additional funding has been provided to directly support pupils with complex additional support needs and services for children and families. In addition, we have funded the Scottish Sensory Centre and CALL Scotland to provide advice and training to schools on the support that they might need, including on the use of assistive technology for children and young people with specific communication and sensory needs. Our social isolation and loneliness fund supports the British Deaf Association, Seescape and Grampian Society for the Blind to reduce isolation and loneliness among people with sensory loss.

An additional £9 million will be invested to reopen the independent living fund, which will enable up to an additional 1,000 disabled people who face the greatest barriers to independent living to access the support that they need.

Reopening the ILF to new entrants realises our commitment to supporting disabled people who have the most complex needs and delivers on a key recommendation of the “Independent Review of Adult Social Care in Scotland”. The investment will provide recipients with the ability to exercise greater choice and control over the support that they receive, thereby enabling them to live more independently. The funding will enable individuals to purchase care so that they can be better supported in their homes and in their local communities. We are working with disabled people’s organisations and with other stakeholders to co-design the fund.

We also commit to making Scotland the best place in the world for users of British Sign Language to live, work, visit and learn. To support that ambition, we have published the new “British Sign Language National Plan 2023-2029”, which was developed with input from deaf, deafblind and BSL communities to ensure that it was informed by lived experience.

We will all, at some point in our lives, need to access community health and social care support, either for ourselves or for our families, friends and neighbours. Everyone who needs to should have access to high-quality support from those services, regardless of where they live in Scotland. We remain committed to delivering a national care service to improve quality, fairness and consistency of provision in order to meet individual needs. Our manifesto commitment to increase social care spend by 25 per cent over the current session of Parliament will result in at least £840 million of additional investment. That will support a range of investments, including in areas that will move us towards a national care service.

Our focus is on listening to what disabled people have told us about the challenges and obstacles that they face, and on finding solutions that address those challenges. I will carefully consider all that I have heard here today, and I remain committed to playing my part in taking forward this important work. I am heartened to see that other members, on all sides of the chamber, feel the same way.

That concludes the debate.

Meeting closed at 17:42.