Technology for people with complex needs and congenital dea…

December 2023 / January 2024 Closing The Gap Solutions - Technology for people with complex needs and congenital deafblindness: A mission impossible? By Eric Van Heuvelen

Technology for people with complex needs and congenital deafblindness: A mission impossible? ? blind / low vision

When a person has congenital deafblindness, living in a world that relies heavily on sight and hearing can be quite a struggle. For those with complex needs and congenital deafblindness, participating in this same world might seem like an impossible mission. Technology can be the key solution to the daily challenges and battles that individuals with cognitive impairments and congenital deafblindness face. Our unique approach to technol- ogy and congenital deafblindness inspires professionals, lead- ing to tailor-made solutions and opportunities for many other individuals with congenital deafblindness. In this article I would like to showcase practical examples, guide you through the creative process, and illustrate how our unique approach to technology can help move from a 'prob- lem-to-solution' for people with congenital deafblindness. I will demonstrate how we aim to increase self-sufficiency and reduce

the 'mission impossible' scenarios that this target group often encounters. For individuals with multiple disabilities in addition to sight loss, overcoming the challenge of enabling access and indepen- dence requires specific adaptations and strategies. Bartiméus FabLab has developed a range of innovative products and is leading ongoing projects specifically designed for people with multiple disabilities and visual impairments (MDVI). It is our belief that every client should have the opportunity to participate in the digital society, and by not introducing them to technology, you deprive people of this opportunity. In this day and age, we are living in a digital society. Various technologies have made our lives more convenient, enabling us to accomplish tasks we could never do before. Most of the time, we don't even realize how rapidly technology is advancing.

ERIC VAN HEUVELEN - I work in the Netherlands at FabLab Bartiméus, which is a special task force within our organization dedicated to adapted and accessible ICT, technology, and tools for people with multiple disabili- ties. The 'Bartiméus Fablab' has been in existence for almost 20 years. This fabrication laboratory has become the epicenter within our organization for adapted and accessible ICT, technology, and tools for people with multiple disabilities. The mission of the FabLab is to improve the quality of life through technology and to apply technology and tools to enhance independence and self-reliance.

Our motto, slogan, or belief is: 'We can't doesn't exist'. In addition to my training as a nurse, I am also educated in microelectronics and computer technology. After working for many years with people with intellectual disabilities, I made the switch to working with people with visual impairments. In the late 90s, I co-founded the ICT advice and training program within Bartiméus, and after approximately 15 years, I started working at the Bartiméus Fablab. In addition to research and advice on the use of technology for people with visual and intellectual disabilities, I am involved in developing, designing, building, and implementing new technologies for people with deafblindness. I am a speaker and presenter at several national and international conferences, such as VISION, DBI, ICEVI, EASPD, CSUN, and I am a co-founder of the Deafblind International Technology Network.

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First, we search for products that are already on the market, such as consumer electronics and dedicated technological aids. Sometimes, it's possible to adapt an existing product to make it accessible and cater to the needs of an individual. If we can't find a solution, we conduct research and query within our network to discover whether solutions have already been developed, prototyped, or if suitable start-ups exist. In some cases, co-creation can help prevent reinventing the wheel. When it's not possible to use any of the aforementioned meth- ods, the only option left is to develop custom-made solutions. So, when the only option left is to create custom-made solu- tions, we have to design and build. It's crucial to collaborate with all disciplines involved, including caregivers, behavioural experts, occupational therapists, parents, and, as much as possi- ble, involve the client during the development process. We also closely cooperate with the Expertise Centre of Deafblindness at Bartiméus (ECDB), where knowledge about (congenital) deaf- blindness is centralized. There are several ways to develop custom-made solutions for individuals with deafblindness. In this article, I would like to discuss the following: • Pencil Case Sensor: This assistive device builds upon ex- isting skills and incorporates technology without the cli- ent's awareness. • The Disk Timer: This device emphasizes the importance of learning skills and can be particularly beneficial for cli- ents with reasonably high cognitive abilities. • Proxacare: a system designed to help deaf-blind individ- uals sense the presence and approach of others PENCIL CASE SENSOR: Imagine a deafblind client (completely deaf and blind) with an intellectual disability. This individual always seeks physical contact with their caregiver, necessitating constant one-on-one care throughout the day. Over the years, brief moments of no contact or touch became possible, and at times, the client would even push the caregiver away. But when the client called for the caregiver, an immediate response was expected. Gradually, the client learned to use a pencil case as a way to signal their need for contact. This particular pencil case was al- ways accessible to the client. When they picked up the case, it indicated their desire for contact, a communication method that had been in place for several years. However, if there wasn't an immediate response when the client picked up the pencil case, they would exhibit undesirable behavior. Unfortunately, it wasn't always immediately noticeable to the caregiver when the client had picked up the pencil case. That's when they turned to the FabLab for assistance in solving this problem—how to ensure they don't miss the client picking up the pencil case.

Technology surrounds us in various forms. We've become reli- ant on even the simplest forms of technology, such as automatic car keys that unlock doors, coffee makers that brew a fresh pot upon your return home, or watches that track your daily steps. Using these basic technologies has become the new norm. With just a button click or a swipe on your phone, the world is at your fingertips. Accessing information is effortless for you and me, making life more convenient and, in some cases, safer. Our reli- ance on technology is evident. The impact on our daily lives is significant when these tech- nologies fail to function. Imagine a day without Wi-Fi, smart- phones, or tablets – it seems unimaginable. We'd probably have a rather challenging day if that were to happen. However, if I were to pose the same question to a person with congenital deafblindness, the impact would be minimal compared to us, as they have limited reliance on technology. So, there is a digital divide. Why? There are four main reasons: • When someone has congenital deafblindness, the com- mon solutions for the visually impaired are often too complex: º To use a braille display, one must be able to read braille. º To use audio description, the ability to hear is required. º Many solutions designed for individuals with learning difficulties are not useful because they rely on visualizations and animations to compen- sate for written text. • There are almost no ready-made solutions specifically developed for this target group. Commercially, the de- mand is not yet sufficient to attract suppliers and create a market. • There is limited advocacy from the target group and their network regarding what they want and why they want it. • Implementation is also challenging. Even when a solu- tion is found, it often can't be used immediately. For peo- ple with congenital deafblindness, learning new skills takes time, requires support, and demands considerable patience from all involved. Almost everything is possible; however, there is a lack of connection between users and developers. There is hardly any exchange of ideas and solutions, and most solutions are cus- tom-made. Consequently, solutions are often expensive. As ex- plained, this is one of the causes of the digital divide. Assistive technology is intended to enhance the quality of life, promote participation, and foster independence for indi- viduals with disabilities. For those living with deafblindness, the interactive effects of combined vision and hearing impairment often hinder the usability of assistive devices. When we are asked for help in finding a (technical) solution, the FabLab strategy is as follows:

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Our starting point was to align with the client's existing hab- its and activities, adhering to established working methods. So, we created a new signaling device, designed in the same shape as the client's familiar pencil case. However, this new version fea- tured a triangular shape to ensure it could stably rest on a table.

set time, for instance, "something" disappears every one, two, or five minutes. This feature can be supported with tactile informa- tion, such as vibration at each "step." Based on this starting point, we built a minimal viable prod- uct (MVP) for the timer. It consists of a single row inspired by the game "4 in a row." Falling discs indicate the passage of time. Filling the row with discs, and involving the student in this pro- cess, serves as a way to introduce the concept of time passing in a familiar and engaging way. Each disc is substantial enough to be felt when present: the discs protrude slightly above the top edge to allow easy detec- tion by touch. When a disc is absent, there is a noticeable "hole" that can be detected by touch, providing a clear indication. Similar to existing timers, our timer begins with all discs pres- ent. As time progresses, the discs fall sequentially, with each one representing a portion of the total time. For instance, if there are five discs, they each fall at intervals based on the total time di- vided by 5. When all the discs have fallen, there are five "holes" left.

Pencil case with corresponding buzzer.

Inside the pencil case, we integrated sensors that would re- spond as soon as the client picked up the case. As a result, a buzzer, connected to the pencil case sensor and built into a re- ceiver that the caregiver carries, would sound. This served as the signal for the caregiver to understand that the client had picked up their signaling device and wanted to establish contact. DISK TIMER: Time and time perception are subjects that often raise nu- merous questions. It's easy to understand that estimating the time of day is particularly challenging for individuals who are blind. We can usually make rough estimates, such as morning, evening, or night, based on various cues. However, for those with severe sensory impairments, and especially those with cog- nitive impairments, grasping the concept of time can be quite abstract. Gaining an understanding of the passage of time can be challenging to explain. Concepts like 'even,' 'later,' or 'in a minute or five' are clear to us, but for individuals with severe sensory impairments, they remain highly abstract and difficult to com- prehend. If there is also a cognitive impairment, this challenge becomes even more pronounced. Technology can offer a solution. A teacher of a 5-year-old deafblind student approached the FabLab with a question: Could they provide a tool that offers insight into the passage of time and the remaining time for activities? This request reflects a broader need for tactile information about the passage of time, particularly for those who can't use traditional visual time tim- ers. Our starting point was to design a tactile time timer suitable for a student with deafblindness. This timer could also be used to varying extents with vision and hearing, depending on indi- vidual needs. However, using a timer during an activity can be challeng- ing. Constantly breaking away from an activity to interact with a tactile timer can be distracting. To address this, we developed a physical timeline on which "something" happens during the

The MVP of the disk timer.

Every time a disc falls, there is a brief vibration, which can be felt through a vibrating pad placed within a stuffed animal (a seal). This seal can be positioned on the table or on the student's lap. When the last disc falls, a different (longer) vibration is felt, and a sound signal notifies the teacher. PROXACARE: Imagine a 3-year-old boy with deafblindness who is bed- ridden. Every caregiving moment, such as changing his diaper, startles the boy. His parents reached out to the FabLab for a solution to help him feel more at ease during these interactions. They wished for a way to make caregiving moments known to him in a gentle manner. The FabLab developed Proxacare, a system designed to assist deaf-blind individuals in perceiving the presence and approach of others. It involves a sensor, which is designed to look like a flower to fit nicely in a child's bedroom. This sensor is connected to a vibrating pad, placed, for example, in a pillow. When someone enters the child's room by opening the door, the sensor detects their presence and activates escalating vibra-

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givers during the development process is essential and highly valuable. This allows for timely adjustments, ensur- ing that the final solution aligns with the initial problem. • Implementing technical tools or solutions for people with deafblindness is a time-consuming process. It involves taking small, deliberate steps, with the critical aspect of feeling progress at each step. It's important to maintain sight of the ultimate goal. • As previously mentioned, there is a notable absence of ready-made solutions specifically tailored for individuals with deafblindness and intellectual disabilities. This pres- ents a considerable opportunity for developers. • Collaborating, learning from each other, sharing knowl- edge, and engaging in international cooperation are of utmost importance Considering the last point, in 2020, we initiated the DBI Tech- nology Network. This network focuses on the broad field of technology that is applicable to individuals with deafblindness, whether acquired or congenital. The network's goal is to identify technology that promotes self-determination, communication, independence, and entertainment. To accomplish these objectives, we aim to make existing and new technology accessible across various domains, including ICT and audiology, for individuals with deafblindness. We gather needs and ideas from individuals with deafblindness related to this topic, and then identify technical solutions through adjust- ments to existing applications or the development of new tech- nology and promote scientific research on haptic perception and haptic technology. And also we want to share information about existing devices and applications in the context of individuals with deafblindness and the professionals involved. The FabLab actively participates in this network, and through the exchange and combination of knowledge and experiences, as well as collaborative efforts, we aim to provide technical solutions for individuals with deafblindness. In line with our beliefs, we like to say that there is always a solu- tion to any problem. Three custom-made solutions have been presented to you in this article. The Bartiméus FabLab has already developed more solutions, and undoubtedly, more will follow. I hope it has be- come evident that through the application of technology and the use of appropriate tools, we can enhance the quality of life, as well as increase independence and self-reliance for people with (con- genital) deafblindness. In the title of this article, I pose the question: Is technology for people with complex needs and congenital deafblindness a mis- sion impossible? Hopefully, I have demonstrated that technology for people with complex needs and congenital deafblindness is a mission possible!

Flower with the proxacare sensor.

tions in a pillow the child is lying on. As the person approaches the child, the intensity of the pillow vibrations gradually increas- es, gently introducing the parent or caregiver's proximity in a pleasant way, preventing the child from feeling frightened or startled. Working with the Proxacare requires a lot of guidance due to habituation time at persons with deafblindness. The Proxacare is a tool that is accompanied by a corresponding intervention plan. This plan outlines how the tool should be intro- duced to individuals with deafblindness and the training process involved. In our opinion, without this intervention plan, Proxacare cannot be effectively utilized. Learning to use this tool necessitates an extended adaptation period, specifically focused on habituation during usage. The indi- vidual with deafblindness must comprehend the meaning of the signals emitted by Proxacare and understand the ultimate conse- quence: contact with the caregiver. Working with Proxacare demands substantial guidance, given the adaptation period required for individuals with deafblindness. In our pursuit of solutions and problem-solving through tech- nology for people with deafblindness, we have become increas- ingly inventive, yet we have encountered both significant and minor challenges. Valuable lessons have emerged: • Extensive interaction between developers and users/care-

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