This report gives a voice to the people we support, and to our colleagues, partners and funders. Together we are building a brighter future, not just for today or tomorrow, but for generations to come.
From 24th – 30th June, the MSI community get together to celebrate Deafblind Awareness Week. The week is held at the end of June every year, to mark Helen Keller’s birthday – one of the most well known deafblind people in history. She campaigned tirelessly to improve the treatment of deaf and blind people, raising awareness of sight and hearing health.
Here at Seashell, we support many children and young adults with multi-sensory needs from across the country, often from a very young age. Our team of Qualified MSI Teachers, Speech and Language Therapists, Occupational Therapists, Audiologists, and Habilitation Specialists work together to deliver a holistic approach to supporting this unique population of learners.
We also deliver training and support to children and young adults with MSI, and the professionals who support them. From Personal Learning Programmes and Advisory Support, to our newly launched Mandatory Qualification for Multi-Sensory Impairment Postgraduate Diploma. You can find out more about our range of unique MSI Support Services here.
Firstly the Seashell Sensory team are holding a Deafblind Café! Refreshments will be available for staff to enjoy while wearing sim specs, sleep shades and ear plugs to help us experience what it is like to eat and socialise in a noisy environment with reduced vision and hearing.
Next, College staff and students have organised a Sensory Pride Parade, to celebrate both the LGBTQIA+ and Deafblind communities, with activities to engage all the senses along the way.
Want to learn more about Deafblindness and supporting someone with multi-sensory needs? Experts from our Seashell Sensory team have also created a series of blogs, delving into different aspects of understanding and supporting someone with MSI.
Click here to read about Cerebral Visual Impairment (CVI).
Click here to read more about how we use our Audiology Clinic to support Deafblind learners.
Click here to read more about the role of the Intervenor.
Click here to read more about introducing Deafblind learners to New Environments.
Click here to read about Usher Syndrome.
Deafblindness is a unique disability affecting a wide range of people from babies to the older generation. It can be congenital (from birth) or acquired (occurs later in life) and varies in its severity and impact on the person’s access to communication, mobility and their environment.
Usher Syndrome is a leading cause of acquired Deafblindness across the world, with approximately 10,000 people with the condition in the UK alone (data from 2010). Advancements in genetic testing and these tests being more readily available are resulting in more babies and young children being diagnosed with Usher. It is a condition that causes varying degrees of Deafness from birth with sight loss occurring later in life, and often affects the young person’s balance.
The type of Deafness associated with Usher is sensorineural Deafness which is a problem with how the inner ear or auditory nerve works. Some people are fitted with cochlear implants or hearing aids to support this. Retinitis Pigmentosa is the visual impairment associated with Usher Syndrome. This is a progressive visual loss whereby the young person will first show signs of challenges in dim light or at night (night blindness) progressing to loss of peripheral vision.
The extent to which a young person with Usher Syndrome will lose their vision is very unique to each individual. Some may retain some degree of useful central vision, whilst others may go blind with no functional vision.
| Type 1 | Type 2 | Type 3 |
| Profound hearing loss or deafness at birth. | Moderate to severe hearing loss at birth. | Progressive hearing loss in childhood or early teens. |
| Decreased night vision by age 10, progressing to severe vision loss by midlife. | Decreased night vision by adolescence, progressing to severe vision loss by midlife. | Varies in severity and age of onset; night vision problems often begin in teens and progress to severe vision loss by midlife. |
| Balance problems from birth. | Normal balance. | Normal to near-normal balance in childhood; chance of later problems. |
Children and young adults are diagnosed with 1 of 3 types of Usher Syndrome, often identified through genetic testing. The severity of Deafness and severity and onset of vision loss is different with each type.
More recently a fourth type of Usher Syndrome is being diagnosed which is characterised by late onset vision loss (from midlife) and late onset Deafness (from late teens to midlife). This type is not thought to be linked to challenges with balance.
Even though a young person is diagnosed as having a certain type of Usher, each person will go on a completely different journey, experiencing sensory change and loss at different times, and processing and adapting to these changes in different ways. No two people with Usher Syndrome are the same.
Children with Usher Syndrome are often late to walking due to the challenges faced by their Deafness or by the Vestibular Dysfunction linked to the condition.
Living with a lifelong, changing, progressive condition is a rollercoaster of emotions for the young person and their families. They often say that just as they are accepting the condition, their vision changes and they are “right back to square one again”, having to relearn skills and find different ways of doing things. Challenges change as the young people move through their education and into adult life but with the right support in place, people with Usher Syndrome are capable of living successful, independent and fulfilling lives.
Here at Seashell, we do our bit to offer support for ordinary living for those with sensory related disabilities and even offer sensory training services to help people living with sensory impairments.
Seashell Trust is a UK-leading disability charity and specialist in supporting children and young people with complex difficulties, disabilities and additional communication needs. We have harnessed this unique expertise to create a range of specialist assessment, support and disability training services that we provide to families and organisations across the education, health and care sectors.
To find out more about what we do and who we are, don’t hesitate to get in touch on 0161 610 0100 or email us at info@seashelltrust.org.uk.
At our special needs college and specialist residential school, we ensure that our deafblind students thrive in an environment that is suited for them. In September 2023, our Royal College Manchester moved into Dockray, the former Royal School Manchester building. Locational changes like this can pose problems for deafblind students, but we were sure to take the necessary steps to make the adjustment as smooth as possible!
On the first day in the college building, one student appeared to recognise the space. He wanted to rapidly map the building, both upstairs and downstairs, and took himself to the room where he was previously based as a school student, taking staff with him. He explored the resources in the room, and once it was clear to him that this was now a storage room, he accepted.
Now that he was familiar with the environment, he quickly accepted his new classroom downstairs and his separate sensory diet room, which he accessed for short periods throughout the day. Another student also seemed very happy to return to her old familiar room!
Building basic daily routines is integral to making our students feel at home in their new learning environment. Our routines encourage our students to map their area, building their orientation, mobility and independence. Within no time, our students were already making massive progress, with one student quickly able to map from the classroom to the kitchen with just a touch of reassurance on her back! Another was able to make their way to the gym when presented with his object of reference!
Whilst certain practical skills are important for helping deafblind students get around, there are also many ways in which we can improve the environment to support them.
There are many ways in which you can better suit your learning environment for deafblind students. Making your space as accessible and tactile as possible is integral to helping students understand the space around them.
You should set up your space with tactile cues which students can associate with different areas, be it textured walls or handrails. Sensory cues like lighting can be an excellent way to familiarise students with their environment and guide them from area to area. When it comes to visual cues, contrast is another important way to aid visually impaired students. For example, darker paints on door frames can contrast the shade of the door to make them far easier to see and recognise. The same goes for contrasting furniture against the walls and floor! It’s also important to keep background noise to a minimum to ensure that deafblind students’ limited hearing isn’t affected.
Here at Seashell, we’re always looking for new ways to improve our space to best accommodate our deafblind students and foster confidence in them as they move around our grounds. It’s paramount that we do our bit to make students feel both comfortable and supported whilst in our care.
Now that you have a better idea of what the environment for deafblind students should be like, why not consider enrolling your loved one in our schools or colleges today? We also offer sensory training to help people understand the needs of deafblind people and support them as best they can. So whether you’re looking for disability training or SEND support, Seashell can help you out.
Why not also consider donating to our disability charity so we can continue creating safe and practical learning environments for those living with deafblindness?
Written by :
Debra Lally (Royal College Manchester Advanced Practitioner)
Liz Shaw (Royal College Manchester Tutor)
Deafblindness is a unique disability. Despite what you may think, it is not simply blindness plus deafness. The impaired senses cannot compensate for one another, making it a distinct disability which impacts on the individual’s ability to access information, communicate with others, and develop independence and mobility. This means that Deafblind people require specialist support provided by a trained MSI Intervenor. But what is an intervenor, exactly, and what does their role involve?
An intervenor is a trained professional who acts as the “eyes” and “ears” of a person who is deafblind, providing specialised communications services and support.
The intervenor works consistently with the Deafblind person to facilitate access, reduce their likelihood of becoming socially isolated and support them in connecting with their world. The Deafblind person is likely to have some useful residual vision and hearing but needs to be taught how to use the information they are receiving through their distance senses effectively.
The intervenor will also support them in learning how to integrate this with all the other sensory input they are receiving, including tactile, haptic, kinaesthetic, olfactory and gustatory. Without this, there is a real risk of them functioning at a level which is far below their capabilities.
The role of the Intervenor spans both home/community settings and educational settings, thereby offering access to visual and auditory information and access to communication. This works to facilitate relationships with others and promote the independence of Deafblind people. By providing sensory access to learning and activities, intervenors help Deafblind people adapt to the many environments around them.
The motto of intervenors is “To do with and not for!” as this allows the Deafblind person to have confidence and a sense of agency!
Here at Seashell, we offer our very own sensory training program to help people support Deafblind people. Our course offers you the knowledge from experts in Deafblindness, as well as in-person experience at our campus in Cheadle Hulme, South Manchester.
If you’re keen to help transform the lives of children living with complex sensory conditions, we are excited to support you in your learning!
Seashell Trust is a UK-leading disability charity and specialist in supporting children and young people with complex difficulties, disabilities and additional communication needs. We have harnessed this unique expertise to create a range of specialist assessment, support and disability training services that we provide to families and organisations across the education, health and care sectors.
To find out more about what we do and who we are, don’t hesitate to get in touch on 0161 610 0100 or email us at info@seashelltrust.org.uk.
Written by Veena Ramrakhiani.
Qualified Teacher of Multi-Sensory Impairments/ Deafblindness; Seashell Sensory Support Team
Sensory rooms make use of various stimuli in order to engage the senses of people living with a variety of sensory conditions. These rooms aim to support people in developing their senses, fostering a new level of confidence, independence, and accessibility in their everyday lives.
Sensory rooms can benefit a massive variety of conditions, from Deafblindness to autism, with proven effectiveness for a whole selection of people. Here at Seashell, we make use of sensory rooms at our facility to support young adults with complex needs, helping them learn, relax and engage.
As part of Seashell’s campus transformation, our Audiology team were given an opportunity to design an industry-leading Audiology Clinic within the new Moulding Foundation Building.
Using our specialist knowledge and understanding of children and young adults with the most complex needs, our fantastic team of experts were able to create a specialist Audiology Clinic that is as accessible as possible – designed with both students with hearing impairments and deafblind students in mind. But what is an Audiology Clinic, and how can it support students?
Our Audiology Clinic is designed to test students’ hearing and sight, offering them the opportunity to move freely and safely around the room. Providing both enrichment and learning opportunities, our Audiology Clinic is an undeniably valuable asset to our campus.
Learning from the difficulties of our previous suite within an older building on campus, we knew we wanted to remove any physical hazards, such as heavy cabinets and leads. We designed a space with limited exposed wiring, disguising it in trunking. Cabinets have been replaced with wall-mounted screens with protective casing. These changes allow our students with visual impairment to move around and map the room freely and, importantly, safely.
We next looked at the testing accessibility for our deafblind students. In a typical Audiology suite, we use a test called VRA (Visual Reinforcement Audiometry), which encourages children to turn when they hear a sound by rewarding them visually with a toy or cartoon. In order to make this more accessible for students who are visually impaired, we have had lighting installed which allows us to light up the side of the room where the sound is. This has enabled us to offer a bigger visual reward for students who may struggle to focus on a small screen or toy.
We are also able to instantly change the colour of the lights which allows greater flexibility to find a colour that may be accessible.
Lastly we looked at adding more enjoyment for our Deafblind students. We have updated our toys to include bigger items, such as beanbags in a bucket, to allow VI students to participate in games. We have also added a vibro-chair to support the students to relax and settle into the room.
Seashell Trust is a UK-leading disability charity and specialist in supporting children and young people with complex difficulties, disabilities and additional communication needs. We have harnessed this unique expertise to create a range of specialist assessment, support and disability training services that we provide to families and organisations across the education, health and care sectors.
To find out more about what we do and who we are, don’t hesitate to get in touch on 0161 610 0100 or email us at info@seashelltrust.org.uk.
Written by Kate Ellor,
(Senior Audiologist) Seashell Trust
So, what is CVI? CVI stands for Cerebral Visual Impairment or in USA – Cortical Visual Impairment. It is the leading cause of childhood blindness and low vision. CVI is a lifelong, brain-based visual impairment, caused by damage to the brain’s visual pathways or visual processing areas.
People with CVI can struggle with visual attention and visual recognition, making it difficult to understand the world around them. Some people with CVI can see the world as distorted and unrecognisable. Others can focus, but might struggle to understand what they see. A crowded environment, a bright sunny day, or tiredness can have a huge impact on the individual’s vision.
Although there are some common traits, CVI manifests differently in everyone. Some people have trouble with facial recognition, hand-eye coordination, or combining vision with other senses. People’s experiences with CVI may change over time, as the condition is lifelong, they often develop unique compensatory skills to manage their visual world.
People commonly associate blindness and low vision with ocular (eye) impairment. But CVI is a neurological issue, where the brain has trouble processing what the eyes can see. Some people with CVI have perfectly healthy eyes, which can cause diagnostic confusion.
There is growing research that suggests many people with CVI also have overlapping conditions, such as cerebral palsy, autism, or Down Syndrome, which makes diagnosis challenging. This is because many of the behaviours presented by CVI also relate to existing diagnoses.
‘Make It Easier’ is a set of three-word prompts that can help a person with CVI access the world, visually. Over time, we can use the ‘Make It Easier’ method to discover the best way to support that young person with their vision.
| Visual difficulty | How to make it easier to see |
| Problems seeing multiple objects | Just one thing |
| Problems with visual search | Clear the clutter |
| Lower visual field inattention | Show it high |
| Right side (or left side) inattention | Better on left (or right) |
| Problems seeing moving objects | Keep it still |
| Variable visual attention | My vision varies |
| Short periods of visual attention | Keep it short |
| Poor acuity, blurred vision, problems with contrast | Big bold bright |
| Delay in switching on or using vision | Give me time |
Seashell Trust is a UK-leading disability charity and specialist in supporting children and young people with complex difficulties, disabilities and additional communication needs. We have harnessed this unique expertise to create a range of specialist assessment, support and disability training services that we provide to families and organisations across the education, health and care sectors. We even offer sensory training services to support people living with sensory impairments like CVI.
To find out more about what we do and who we are, don’t hesitate to get in touch on 0161 610 0100 or email us at info@seashelltrust.org.uk.
Written by Veena Ramrakhiani.
Qualified Teacher of Multi-Sensory Impairments/ Deafblindness; Seashell Sensory Support Team
Join us at the Bowdon Rooms in Altrincham, for a fun-filled, chilled night, with a live band, DJ Sets and an opportunity to get your dancing shoes on, have a glass or two and just have a great night out.
“We are incredibly grateful to Rob and Michelle for holding this pre Brit Fest Party in aid of the children and young adults at Seashell. Not only is this going to be an amazing night for those who attend, but importantly it is also going to help raise funds that will help young people with the most complex disabilities have the very best chances in life. As a charity, we rely on fundraising to make sure our students and residents have access to specialist equipment, fantastic facilities and a variety of life-changing experiences.” – Lorna Thompson, Event Fundraiser at Seashell
The pre Brit Fest Part in aid of Seashell will kick off at 7pm and finish around 1am.
Tickets costing just £27.50 (all proceeds going to the Seashell Trust).
The Brit Fest is the much-anticipated family-friendly music festival taking place in the grounds of Ashley Hall & Showground from Friday 5th to Sunday 7th July 2024.
The pre Brit Fest party will give you a taste of what to expect at the festival.
To book online or find out more please go to www.thebritfest.co.uk
