 Yr endyn Llongell y Bydnys yn ystafell a'r bwysigion o'r Mwos multiplication 7.0.0 yn y beth Rhona Macai o dyffinisiwn y ffordd ffli Venus, mae erbyn yn cael ei cyffredinol oedden nhw i bwysigion i'w bwysigion o'r prisiwn, a hynny sy'n gwybod ar hyn yn y bydd Rhona Macai o'r bwysigion i'w ffli Rhona Macai o'r bwysigion o'r ffli Venus. That is an absolute pleasure to be leading this debate on recognising deafblindness as a distinct condition and specialist disability in Scotland. I'm very privileged to have deafblind Scotland's HQ in Lensley in my constituency. In fact it's about one mile from my house. There's a fantastic organisation with a caring professional team led by Chief Executive Isabella Goldie and I'm delighted to say that Isabella and many of her team benodol. Mae'r gael diwylliant ar y glerogol i chi'n bod i'n rhoi gael rhai a gael gael rhai. Yn ymlaen, eu gafoddych am fawr oot yn oses hwnnw gwaith cyfleu i'r sredig arnod y gyflaen hwn, ac mae ei fylwg gweithbeth o'r gyflaen, mae'r gyflwyfiad dda chi wedi'i adon, iawn, ac maen nhw'r gael, nid oes negu i ti'r gwneud o'r Gwyrd, ac rwy'r gyffredig i li gydag ein llwy yn gambol iawn o'r Llywodraeth i chi ddiweddol. rwyf i mwyn i, yn 2016 dyna rai sy'n cymaint i'r cymaint yn sylwyr sydd y Rept. Rwyb bod hyn yn byw yn gweinidol, rwyf i rydyn ni i'r byw yn cymaint, rwyf i rydyn ni i serfodd, rydyn ni i serfodd a rydyn ni i derbyn, rydyn ni i serfodd a rydyn ni, a'r bobl a'r byw yn gwneud. Rydyn ni i serfodd a thym ni i'n gwybod yn ei wneud i maes ar gwybod i gwelli, a chael iddyn nhw. a the fact that we can and should do a few things. 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 faced by the deafblind community. Lack of a definition can lead to significant inequalities in terms of access to education, employment, healthcare and public and social services and 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 the resulting loneliness. Addressing this demands specialist interdisciplinary approaches and skilled early intervention when it comes to diagnosis. The World Health Organization, alongside other significant health systems in countries, have adopted the Nordic definition of deaf blindness, which states, and here I quote, as part of it, deaf blindness is a combined vision and hearing impairment of such severity that it's hard for the impaired senses to compensate for each other. Thus deaf blindness is a distinct disability. To varying degrees, deaf blindness 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 deaf blindness to pave the way for a more inclusive and equitable future for deaf blind people. It would enable Scotland to uphold and enshrine the human rights of people living with a dual sensory loss now and in the future, because 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. Presiding Officer, I'd like to congratulate the cross-party group on deafness for all the work that they've done on working towards Scotland adopting the Nordic definition of deaf blindness. This is a perfect example of a cross-party group working to achieve something that would have a lifelong benefit to the estimated more than 34,000 people who live with this condition in Scotland alone. Sadly, this number is set to rise in line with an ageing population. Presiding Officer, I'd like to highlight Julie's case with her permission. Julie lives with Usher's syndrome and was diagnosed as dual sensory impaired later in life. She's a teacher working and living in Orkney and is a young mother. Deaf Blind Scotland's report her remotely. She said, I've experienced how essential it is for deaf blind 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 from a 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 I could say here tonight could illustrate more powerfully than Julie's story about why deaf blindness should be recognised as a distinct disability. Another issue I've raised several times in this chamber is that of free travel for deaf blind companions. There's no national standard fare structure for communicators to accompany deaf blind passengers and trains making travel impossible. Another basic human right most of us take for granted. I understand it is free in some routes but chargable in 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 deaf blind people. I have had encouraging replies from my ministers when I've raised this before and I would hope that this is something we could deliver sooner rather than later. People that have already opened up a whole new world are communicators who act as the eyes and ears of a deaf blind person. This is a highly skilled role which involves many years' training but sadly the remuneration is poor which makes recruitment very difficult. I know finances are tighter than ever these days but I would hope that this could be addressed in future budgetary planning in social care. So in conclusion, Presiding Officer, I hope that tonight's debate has managed to shine a light on some of the things we could do to help our deafblind community. So let this debate be a turning point to do that by recognising and supporting this distinct disability. It is the very least we can do for members of the deafblind community. I look forward to hearing members' contributions across the chamber and thank you again to the deafblind team and users for coming to the gallery tonight. Thank you. Thank you very much indeed, Ms Mackay. We now move to the open debate. I call for Shroz McCall to be followed by Stuart McMillan around about four minutes, Ms McCall. Thank you, Presiding Officer. I am delighted to be taking part in this debate to highlight the progress towards the formal recognition in Scotland of deafblindness as a distinct disability. And I thank Rona Mackay for using this member's business allocation to discuss the important issue. Thank you. I would also like to welcome the visitors to the gallery. It is nothing worse than turning away from the microphone, sorry. Visitors to the gallery and I welcome them here this evening. For me, one of the best perks about being an MSP is that you get to be involved in very varied and interesting groups where you are given the opportunity to learn from experts in their field. Hopefully then you can stand up in the chamber to promote causes. You can speak from the heart, push the debate and really make a difference to people's lives. Presiding Officer, this is exactly one of those situations and I sincerely hope that we can use this debate to do just that. As a member of the cost party group for deafness, I can add first hand evidence to all the hard work done by the members that attend the group and in particular the subgroup who have put in a tremendous effort to ensure that the definition of deafblindness is adopted in Scotland. I would love to mention them all by name but, as you say, I've only got about four minutes, but they did a fantastic job. After a quick Google search, I stumbled upon the following what I thought were interesting points. The first time deafblindness was documented was back in records of the Crusades. That history of deafblind education began in the early 1900s in Paris with a young lady named Victorine Morceau. Hopefully I got that right. Laura Bridgman was the first deafblind person to be educated in the United States back in 1837 and that the UK Department of Health recognised a definition of deafblindness back in 1995. Given the centuries that have passed, I can only assume that many will feel frustrated that we still have some progress to make here in Scotland to formally recognise the definition and I hope we're on the last lap of that. I want to add my request to that of Deafblind Scotland and the CPG for Deafness in asking the Scottish Government to recognise deafblindness as a distinct condition and specialist disability here in Scotland and to reinforce the European Parliament's position highlighted in the motion that this is a crucial step towards identifying, diagnosing and supporting people with dual-century loss who live in Scotland and hopefully make strident steps to addressing the unique challenges faced by the deafblind community. Current research estimates that more than 30,000 people live with the condition in Scotland and this number is set to rise in line with an aging population as Ms Mackay commented on. I've already mentioned the perks of learning something new and being a member of the cross-party group for deafness has highlighted another issue. This time highlighting the links between dual-century loss and dementia. Considering the number of people living with the condition and that it's the aforementioned increase that will continue due to our aging population, it would be remiss of me not to highlight this connection. I know that the cross-party group for deafness is already working on this issue. Steps taken to formally recognise the deafblindness definition and the resulting ability to fully diagnose the condition will hopefully pave the way towards a comprehensive screening programme. The benefits of early intervention of dual-century loss will not only ensure proper support that is provided to enhance the lives of people living with deafblindness but can modify the risk of dementia in later life. I urge the Scottish Government to engage with the CPG of Dessimus on that topic. In conclusion, adopting this definition will enable Scotland to uphold and enshrine the human rights of people living with dual-century loss now and in the future. Thank you, Ms Mackay. I now call Stuart McMillan to be followed by Carol Mocken for around four minutes, please. Thank you very much for playing all-star. First of all, I want to congratulate Rhun ap I for securing this important debate. As convener of the cross-party group on visual impairment, I recognise how challenging the dual-century loss can be for people as this has been raised at some of our cross-party meetings in the past. It is also brought to my attention by a constituent with dual-century loss. It should make me aware of the Nordic definition of deafblindness and I have since set up a meeting with the deafblind Scotland chief executive, Isabella Goldie, to discuss this in more detail. But I believe she and others involved in the work are in the gallery this evening, so I do also want to pay tributes to them and also welcome them to the Scottish Parliament. So, I think also that as per the motion before us, it is clear to see why Scotland needs to adopt a formal definition of deafblindness. First and foremost, this would help us identify, diagnose and ultimately better support people with dual-century loss in Scotland. When dual-century loss often occurs over time, meaning 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 lose their ability to communicate in their first and often only language. And had earlier support being provided, it would have allowed for tactile communication to have been taught. Equally people with sight loss who lose their hearing can become isolated with limited communication avenues. And this is why I support adopting the Nordic definition of deafblindness in Scotland. Especially as this is already the case elsewhere in the UK and also within the European Union. Regarding the Nordic countries, it's worth noting that after adopting this definition, they went on to deliver better services and early identification of those at risk of a second sensory loss. And therefore, I'm also Scotland can learn from other nations about how best to develop care pathways for those with or at risk of developing deafblindness. And this is important as I'm told that apart from deafblind Scotland, only a few small organisations offer specialist services to people with dual sensory loss. And some will argue this issue is not a priority given the low incidence rate of this disability. But the consequences of not providing the right support can be catastrophic for people and their families. Which is why ensuring the right services are in place is absolutely crucial. At this point is reinforced by the fact that deafblind Scotland have said that all too often they receive referrals for people who could have been provided with better emotional and practical support early in their transition to do a dual sensory loss. Now I also understand that the short life working group of the CPG in deafness has been set up to look at concerns about dual sensory loss being identified in care home residents. I know that the cross part to good vision impairment shares these concerns and the correlation with the cognitive decline. It's something that we discussed at our last meeting. In closing, I'm saying also I believe that Scotland should formally recognise deafblindness so that research and services can be designed to better support people affected by dual sensory loss. Once again, I do want to congratulate my colleague, Euron Mackay, for securing this hugely important member's debate. Thank you, Mr McMillan. I now call Carol Mawchen to be followed by Karen Adam around four minutes. Miss Mawchen. Thank you, Presiding Officer. Can I also really thank Euron Mackay for bringing this important debate to the chamber? And of course, like other members, welcome everyone in the gallery, the members, the interpreters and all the families. It's absolutely great to see you here. As we have heard, deafblindness is a low instant, but very high impact disability. And I believe that the work of the cross-party group, members of the deafblind community and of the families involved means that we have made progress. But this debate allows us to bring the issue into the chamber and therefore closer to the minister who I hope will have some good news to bring to us in her closing remarks. I know from speaking to members of Deafblind Scotland earlier 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, which was explained to me this afternoon. However, both senses are affected enough to create difficulties in everyday life. Areas that we all take for granted communication, assessing information and simply getting around. And we discussed that this is what is important about getting a definition for this disability. In my time within the Scottish Parliament, much of our debates have taken up quite rightly by how we ensure human rights are enshried in our everyday work policies and laws. And today's member's business is very linked to this very important issue. Recognising this disability as a human right and allows us to ensure services are provided on that basis. An estimated 31,000 deafblind people are currently living in Scotland. And as we have heard this evening, Scotland does lack that legal definition for deafblindness. Now, in my notes, I have written why is this important. And I want to just mention that in talking to the community and to deafblind Scotland, it is important to that community to be recognised. And I think that is an issue that I wanted to bring to the chamber that perhaps I didn't have in my notes because I looked for much more clinical policy-based reasons. But it is important to the community that this is recognised. On trying to read up on why we might find this important in terms of legislation and regulation, it is a crucial step towards identifying and diagnosing people with dual-sensory loss as early as possible so that we can address as support workers, as clinicians, as part of the social care network, we can address the unique challenges that people face at the earliest opportunity. And this includes the provision of services which I have heard today are very unique to individuals in this community. And if we miss early on that opportunity then it is a missed opportunity for that person and their life. The cross-party group in the Scottish Parliament have been well supported and I just wanted to mention that Rona Mackay has done a lot of good work and also Annabelle Ewing is well recognised in her support for this area. I'm running out of time but I just wanted to mention that my experience of working with families and understanding and believing people who are receiving services and their families they do know what we need to do to change lives and so I would hope that the minister has some good news for us today because understanding that we need this definition to then move on and make proper policy decisions support commitments to people is really important and I really thank everybody for their contribution today and to the members in the gallery as well. Thank you Presiding Officer. Thank you Miss Mocchi. We now come to the final speaker in the open debate, Karen Adam, around four minutes please. Thank you Presiding Officer and I want to extend my thanks to Rona Mackay for bringing this debate to the chamber today. It is an incredibly important one and also my welcome to the people in the gallery. I've raised my experience as a child of a deaf adult on several occasions in this chamber and gave my dad many mentions but my experience as a Coda CODA child of deaf adult has deeply influenced my understanding of how we should approach disabilities particularly ones relating to hearing loss and to communication. The first ever meeting I had with a deaf-blind person was over 40 years ago and I was just a wee girl visiting the deaf club in Aberdeen with my dad and elderly women was sitting at a table with a few people surrounding her and a person was sitting crouched down beside her holding the elderly women's hand upwards in the palm of her hand and they were using the palm as if it were a type of drawing board or keyboard. My dad placed his hand on my back and coaxed me forward to go and say hello and I looked back and signed at him what is she doing and he signed to me she's deaf and blind and that's how she communicates. I went over and waved hello to the person doing the interpreting they then signed to the deaf-blind women that a young girl Len's daughter was saying hello to her she gave me a huge smile and tapped my hand. What I didn't understand then but I do have a profound understanding of now is the social isolation and loneliness that can accompany living with deaf blindness and how my dad's small push on my back was a small but significant teaching to ensure that I was polite introducing myself and encouraging me to have a go at communicating regardless of the hesitations I had at my abilities because everyone needs connection and also what I realised as an adult is that this interaction gave me the opportunity to learn that deaf blindness even within our deaf community the deaf people and the codas was still 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 where your communication and ability to access information are impacted is a distinct disability deaf blind UK explains if you mix the colours yellow and blue 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 deaf blindness if you have sight loss and you have hearing loss then you are deaf blind which is a completely unique condition across Scotland around 30,000 people are living with deaf blindness as we've heard and it is worth repeating I just did a research and that's about the equivalent to the population of Dumfries so that's quite a significant amount living in Scotland now there's a wide variety of ages but it is more common in older people like the lady that I met when I was just little and because of our age and population as has been said it is due to rise some of those living with deaf blindness will struggle to see and hear the television while others may not be able to see or hear anything at all and there's a wide spectrum of dual sensory impairment or loss that affects everyone differently currently as we've heard Scotland does lack the legal definition for deaf blindness and I believe that if we agree on a definition that it would be a crucial step forward and we could be recognising and diagnosing dual sensory loss at the earliest point and addressing the unique challenges faced by the deaf blind community the world health organisation alongside other significant health systems and countries have adopted the Nordic definition of deaf blindness and the European Parliament recognised deaf blindness as a unique disability 20 years ago it's time that Scotland did the same and I'm grateful for the work of Deaf Blind Scotland for raising this and for the support of colleagues and other stakeholders on the cross-party group on deafness which I am a member and I'm grateful for the opportunity to speak in this debate and it's particularly poignant to note that our speeches today could be being uniquely translated as we deliver them to those who relate to the deaf blind experience and I just hope we've done it justice thank you I'm sure you have well done Ms Adam I now call on Marie Todd to conclude the debate Minister around seven minutes please Thank you Presiding Officer First of all I'd like to express my thanks to everyone who's attended the debate today and for your insightful and interesting contributions thanks to Rona Mackay for bringing this issue to the chamber and I'd like to add my welcome to members of the deaf blind Scotland community welcome to the chamber you've welcomed me several times to Lindsey so it's an absolute pleasure to welcome you to my workplace it's clear that everyone in this chamber is familiar with sensory loss whether that be through personal experience or as it's touched the lives of family, neighbours or constituents I applaud the hard work of the CPG and others who've contributed their time and their energy in defining deaf blindness as a distinct disability and the planned launch of the declaration in June for Deaf Blind Awareness Week Many of today's contributions have mentioned excellent examples of work going on the lens in the breadth of Scotland to support people with sensory loss and I thought Karen Adam, as very often in these debates brought absolutely to life the experience that our deaf blind community have and the impact of sensory loss on the ability to participate with all of the things that we take for granted I'm in awe of the people who live with dual sensory loss and I am keen to do what I can to support both Deaf Blind Scotland and in the incredible work that they do and the community themselves The Scottish Government supports the social model of disability which is a way of viewing the world which has been developed by disabled people and it allows us to look at disability through a social lens and in general terms the definition of a disability under section 6 of the 2010 Equality Act will already cover a person with deaf blindness if they have a physical impairment which has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities there are protections in the act against discriminations on the grounds of their disability section 20 of the section of the 2010 act requires reasonable adjustments to be made if certain conditions are met and a failure to comply with that duty to make reasonable adjustments will also be discrimination under the act so I am keen to better understand where the definition has been adopted across the UK and what difference that has made in practice there's the small issue of the legislative competence for the 2010 act lying in Westminster rather than here in Scotland but I make a commitment here today in the chamber to explore all these issues with deafblind Scotland and with the interested members who have spoken in this debate because essentially I recognise absolutely how important formal recognition is to the community and I am keen to work with them to resolve the many challenges that I am certain that they face now I was delighted as I said to visit deafblind Scotland last year learning about the work that they do to support deafblind people as well as their insights about improving services at a national level creating that fairer more equal society is absolutely a priority for this Government and our ambitions to achieve equality for all go hand in hand for our ambitions for a strong economy I want to take this opportunity to share some of the work taken forward by Scottish Government to support people with hearing loss, sight loss and dual sensory loss we are supporting the right to dream project a partnership between deafblind Scotland and visibility Scotland to pilot a training course supporting people 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 and support people at risk of a secondary sensory loss to acquire further communication skills our seahear strategy supports children and adults who have deafness, sight loss and dual sensory loss to access the support and social care they need through the seahear strategy the strategy published in 2014 and jointly endorsed by COSLA is being implemented by local partnerships across Scotland over £5.5 million of funding has been allocated since 2014 to support local implementation of the strategy and to help to drive progress and this year a further £600,000 has been committed to invest in the ongoing development and delivery of the strategy since 2019-20 over £11 million of additional funding is being provided to directly support pupils with complex additional support needs and services to children and families and as well as that we fund the Scottish Sensory Centre and call Scotland to provide advice and training to schools on the support they might need including the use of assistive technology for children and young people with specific communication and sensory needs our social isolation and loneliness fund also supports the British Deaf Association Seascape and Grampian Society for the Blind to reduce isolation and loneliness for people with sensory loss an additional £9 million will be invested to reopen the independent living fund enabling up to an additional 1,000 disabled people who face the greatest barriers to independent living to access the support that they need now reopening the ILF to new entrants realises our commitment to supporting disabled people with the most complex needs and delivers on a key recommendation of the independent review of adult social care the investment will provide recipients the ability to exercise greater choice and control over the support that they receive enabling them to live more independently and the funding will enable individuals to purchase care so that they can be better supported in their homes and within their local communities and we're working with disabled people's organisations and other stakeholders to co-design the fund we're also committed to making Scotland the best place in the world for users of British Sign Language to live, work, visit and learn and to support that ambition we've published a new BSL national plan for 23 to 29 which was developed with input from deaf, deafblind and BSL communities ensuring that the plan was informed by lived experience at some point in our lives we will all need to access community health and social care support either for ourselves or for our family, friends and neighbours everyone who needs to should have access to high quality support from these 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 that meets individual needs and our manifesto commitment to increase social care spend by 25 per cent over the course of this Parliament will result in at least 840 million additional investment and that will support a whole range of investment including areas which will move towards a national care service so our focus is on listening to what disabled people have told us are the challenges and obstacles they face and finding solutions that address these challenges I'll carefully consider all that I've heard here today and I remain committed to playing my part in taking forward this important work and I'm heartened to see that others across this chamber feel the same way thank you thank you minister that concludes the debate and I close this meeting of Parliament