“Ain't No Mountain High Enough" Independency Through Techno…

“Ain't No Mountain High Enough" Independency Through Technology for People with Complex Needs and Visual Impairments for our Most Complex Commuinicators by Maaike Meerlo 2023 October / November Closing The Gap Solutions Volume 42 #4

blind / low vision

“Ain't No Mountain High Enough!” Independency Through Technology for People with Complex Needs and Visual Impairments.

INTRODUCTION We live in a digital society and technology is everywhere. It is intertwined with our lives. Technology is in the smartwatch on your wrist, in the phone that is in your pocket or in your car key that automatically opens your door. With the click of a button or a swipe on a smart screen the world is within our reach. From Wi-Fi connectivity to navigation through Google Maps and the convenience of smartphones, these tools have become essential for starting our day right. The impact of technology on our lives has far exceeded our expectations, evolving into what is now our new normal. But what impact does the use of technology have on those with complex needs? The answer is unfortunately not the same. Persons living with complex needs face daily obstacles and are usually unable to benefit from that same digital society. But when a person has complex needs and a visual impairment, these obstacles can be even higher and participating and ben- efiting from the opportunities that technology can offer are not as self-evident. Sometimes it seems that overcoming the chal- lenges for this target group is a too big of a hill to climb. Does a person with complex needs and a visual impairment encounter the same limitations as an individual without disabil- ities when the technology they rely on isn't accessible to them? It is highly unlikely. For those without disabilities, technology of- ten serves as a tool to enhance convenience: They might be able to manage without gadgets like fitness trackers, voice assistants, or smart home systems. However, the scenario is notably differ- ent for people living with complex needs and a visual impair- ment. Unfortunately, for this target group technology is often more than just a gadget and can be beneficial in many ways. For

instance: Technology may serve to compensate disability and support learning in classroom situations. It can be a valuable lei- sure activity, aid and broaden communication with friends and family or even enable greater participation in the community and promote independence. At Bartiméus, a leading center of expertise for the visually im- paired in the Netherlands, the challenge of enabling e-Inclusion to clients with complex needs has been a long-standing one. At Bartiméus, over 500 people with complex needs and a visual im- pairment live at several assisted living arrangements and receive 24-hour care. Bartiméus believes in, and strives for, an inclusive society for the visually impaired. Those living with only a visual impairment already have access to many tools that can aid or compensate their disability such as braille, iPhones and aides for enlarging text. For people with both a visual impairment and complex needs, these solutions are often too complex. Generally, this target group cannot read or write and because of their cogni- tive disability are unable to benefit from the many solutions developed for people with a visual impairment. However, these people too have the same needs and wants to be more self-suf- ficient. In order to meet these needs, Bartiméus has set up a special taskforce called‘The FabLab’, (Fabrication Laboratory) which has be- come the epicenter within the organization for adapted and acces- sible ICT, technology and tools for people with multiple disabilities. It is our belief that every person should be able to participate in the digital society. The FabLab has researched and developed a range of innovative products and leads ongoing projects specifically for people with multiple disabilities and visual impairments.

MAAIKE MEERLO is a consultant assistive technology and healthcare innovator at Bartiméus, a center of expertise for the visually impaired, in the Netherlands. She is one of the experts of the innovation lab known as ‘FabLab’ and tries to find, create, and implement solutions for those with complex needs and visual impairments and leads ongoing technology projects aimed at elevating the quality of life and self-reliance of this specific target group. The author of this article has no affiliation with the products and brands named in this article.

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'CAN DO’ MENTALITY. Since 2007 the FabLab has been trying to find smart solutions to the personal challenges of the people who live, work and go to school within our organization. The residents and students are people with a developmental age between 10 months and 8 years and their level of care depends on their additional dis- abilities (physical disability, autism spectrum disorder and other medical challenges), but generally speaking all 500 residents need 24-hour care. Because the digital society is all around us, the FabLab detected the need for smart solutions for the per- sonal challenges our clients face on a day-to-day basis. The Fab- Lab has three main functions: ADVICE AND CONSULTATION The largest amount of our work consists of consulting and advising residents, their parents, teachers and healthcare pro- fessionals. They can request a consultation in which we explore a person’s challenges and try to find a fitting solution. SHARING EXPERTISE AND EXPERIENCES Having multiple disabilities and a visual impairment, a person automatically belongs to a niche target group. Solutions often need to be tailormade to suit their needs to enhance quality of life. Over the years, the FabLab has gained expertise that is quite specific and unique. The FabLab aims to share information and tries to raise awareness of the importance and benefits of en- abling clients to experience technology. INNOVATION AND DEVELOPMENT. Technology and its possibilities are ever changing. Keeping up with the latest technological opportunities as they arise is very important. In some cases, creating our own bespoke solu- tions is the only option. We often collaborate with universities and other healthcare professionals for developing innovative products that suit the specific needs of the target group. FROM PERSONAL CHALLENGE TO SOLUTION The examples of personal challenges range from being able to send emails, listening to music, mobility challenges to feeling safe at night (proximity). These daily tasks are generally occur- rences that this target group needs help with from a caregiver or teacher. They are the day-to-day things that a person without a disability can execute without any thought. Solutions developed in the assistive technology field are wonderful but can often not be used by those with a visual impairment. Many products use sight to compensate a disability, for instance AAC devices that use touch screens and pictograms to enhance communication or a visual timer that supports time management. When a per- son has multiple disabilities in addition to sight loss, overcom- ing the challenge of enabling access and independence requires specific adaptations and strategies. The method on how to find certain strategies and (tailor-made) solutions are all combined in

an organization-wide e-Inclusion-for-all-strategy that has been implemented for our clients with complex needs. Our strategy is question and problem solved-based and as- sumes that there is always a solution available. It focuses on delving into a person’s personal challenges and really tries to figure out which part of a person’s quality of life and/or self-suf- ficiency can be enhanced. We often ask the ‘question behind the question’ and try to define the goal of use of technology. Tech- nology is used as a means, not an end. The personal challenges encompass the components of the International Classification of Functioning, Disability and Health (ICF). These classifications are used to determine the severity of someone’s disability. It often looks at someone’s incapability in areas such as mobility and motor development, communication, social activities and leisure, learning and applying skills and self-care. At the FabLab, we strive to approach these classifications and limitations from a unique perspective: how can technology be used to amplify quality of life, transforming "it's not possible" into a resounding "yes, you can!" Our mission revolves around converting as many limitations as possible into newfound abilities. Several of the ICF classifications contain reoccurring themes that are often part of individual challenges that require a solu- tion. Within these classifications mentioned earlier, there are a couple of reoccurring themes that are common for individual challenges. Access to information . Because of their visual impairment, almost all clients need help accessing information. From newsletters to reading emails or postcards from relatives to a personal care plan or invitation for a doctor’s checkup: almost all written text needs to read by a teacher or caregiver. There are several solutions to provide ac- cessible access to information such as text-to-speech solutions such as the ClearReader or the digital label reader PennyTalks. Mobility and orientation . All people with multiple disabilities and a visual impairment have mobility issues. Some people are able to learn certain routes in a familiar area, however, many need help from a sight- ed person getting from A to B. We try to find solutions for smaller mobility challenges such as finding your way from the bathroom back to your bedroom by for instance installing a Google Home speaker in each room and following the sound that’s playing on a specific speaker. Leisure activities. Gaming, using an iPad of listening to music: each are exam- ples of daily entertainment that requires adaptations. Nowadays many products offer touch screens only, something a visually impaired person cannot use. We try to find solutions and prod- ucts that suits a person’s abilities. Time management Learning to tell time and being able to manage time, is a challenge on its own. But when you have not been able to see a clock and are unable to grasp the passing of time, overseeing

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how long an activity takes or how long it takes until the next ac- tivity begins, is very difficult. Some persons with a visual impair- ment are unable to see light which also means that experiencing the sun going up or down can make it challenging to maintain a night and day cycle. There are so many technological possibilities. Solutions do not need to be big or grand to have an effect. Even the smallest type of technology can have a big impact. Technological solu- tions can be divided into three categories. Consumer technolo- gy, assistive technology and ‘blind tech’- technology especially developed for people with a visual impairment. We always try to look for solutions in consumer technology first. That doesn’t

mean we rule out assistive technology. Using consumer tech- nology often means that a product is widely available, that it is well-made, not stigmatizing and often quite budget-friendly. This stands in contrast to assistive technology and customized solutions, which tend to be less readily available and might come with a higher cost. Occasionally, an existing solution needs to be adapted to achieve the best usage. Adaptations can be small such as making buttons tactile with felt or other textures, but sometimes a prod- uct needs a bigger adjustment such as making it switch accessi- ble. There are also many examples of personal challenges in which there is no ready-made solution available in consumer technolo- gy and in which we need to develop a tailor-made solution. For example, there are little to no solutions developed for people with deafblindness and complex needs. The only option is to create bespoke solutions. The challenge that must always be taken into consideration is that developing individual solutions are often costly and usually not applicable on a larger scale. Once an individual's specific challenge or issue has been iden- tified, a trial phase is initiated. Collaborating closely with an edu- cator or caregiver, the FabLab undertakes the implementation of the selected solution or product. This is followed by an evaluation in which the effectiveness of a solution is assessed. If needed, a solution is adapted or adjusted to align more precisely with the person's requirements. It is also a possibility that the chosen solu- tion or product is not a success which means we must go back to the drawing board and start from the beginning.

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Technology Trend watching In addition to finding and developing solutions for our cli- ents' individual challenges, the FabLab is committed to staying at the forefront of the latest technological advancements. We actively seek out new opportunities that hold significant poten- tial for enhancing the lives of those with visual impairments and complex needs. When in 2018 the smart speaker Google Home was introduced in Dutch, we immediately initiated pilots across several living arrangements. Our expectations were positive, yet the extent to which this device would empower users in achiev- ing self-sufficiency surpassed our initial forecasts. Basic tasks like setting alarms, timers, tuning into radio stations, fetching infor- mation, and enjoying news or music suddenly became achiev- able without the need for caregiver assistance. A new digital world with new possibilities became available. Following two years of comprehensive piloting, we resolved to introduce Google Home speakers within our three residential care facilities. We aimed to make these devices accessible to all interested and capable users. The implementation journey was marked by numerous challenges, including ensuring WIFI avail- ability across all locations, navigating strict privacy and data-pro- tection regulations within the healthcare sector, and addressing the digital hesitancy among caregivers. Yet, the effort was unde- niably rewarding. As we began deploying the devices in commu- nal spaces and individual bedrooms, the clients' response was overwhelmingly positive. Contrary to our concerns about hesi- tancy toward a novel and unfamiliar product, most individuals embraced this innovative product with open arms. It was as if they had finally found a tool devoid of the barriers posed by touchscreens or complex buttons, and most notably, one that required no visual assistance to complete tasks that had previously necessitated help from a sighted person. With simple voice commands, they could now listen to their favorite music, ac- quire information about subjects of interest, or even just inquire about the time. The project team was amazed by not only the in- crease in self-sufficiency, but also observing a surge in pride and self-esteem derived from accomplishing tasks independently.

Addressing the unique challenges faced by individuals with complex needs and visual impairments requires both experience and a fresh perspective. Experience helps us understand their spe- cific challenges, while a new viewpoint sparks innovative solutions. By combining what we've learned with new ideas, we can develop better ways to use technology and improve the lives of these in- dividuals. This dual approach not only draws from past successes and lessons learned but also encourages a forward-thinking mind- set that embraces the rapid evolution of technology but also chal- lenges to look at technology with a more creative mentality. Often, one technological solution can be used for many different personal challenges. This approach keeps us adaptable and open to new technologies, ensuring we provide effective support tailored to their needs. This strategy is the result of years of experience and trial-and-er- ror and has been adjusted along the way. We have tried to develop and implement a holistic and sustainable approach that suits the needs of people with complex needs and a visual impairment. This is Ricardo. Het is 57 and has little vision left. He also has early-onset Alzheimer’ disease. Ricardo uses a walker during the day and can get around the house by himself. His carers often need to remind Ricardo to use his walker. For the last couple of weeks Ricardo made a bad fall during the night when going to the bathroom. He forgot to take his walker. At night Ricardo is being monitored from a dis- tance and there is not a carer in the direct vicinity. Together with staff we thought about a solution and installed a sen- sor used generally in shops and stores that plays audio once it detects motion. In this case it would start to play: “Don’t forget to take your walker, Ricardo” when the senor would detect Ricardo’s feet touching the floor. It took a little bit of experimenting and adjustment of the audio, but since the use of the sensor, Ricardo has not fallen at night. Practical example of consumer technology Heidi is a 54-year-old woman with congenital deafblind- ness. Because of her cognitive disability Heidi has little sense of time and has trouble estimating when her next activity begins. This caused a lot of stress, sometimes even self-harm. Traditional aides for time management such as audio watches or a Time Timer are ineffective because as she cannot see or hear them. We developed a cushion which would be offered to Heidi whenever there were mo- ments she would have to wait. Using varying vibrating pat- terns, it helps Heidi sense time passing, with vibrations in- tensifying as minutes elapse. When waiting ends, a distinct vibrating pattern signals the activity change. The use of this product took a lot of training, but resulted in less stress and self-harm. Example of a bespoke solution

Google Home speakers

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Inspiration leads to innovation . The rapid evolution and frequent breakthroughs in technol- ogy bring about dynamic changes on a daily basis. The amount of new technological solutions that are being made available, is sometimes a challenge to keep up with. For healthcare pro- fessionals, keeping up with the latest advancements can be an complicated task. For them it is often difficult to envision the po- tential that technology can have for their clients. Therefore, we have created three dedicated spaces which showcase the very many technological solutions that can aid the advancement of self-sufficiency and quality of life.

Rather than directing their frustration at caregivers, some began using Google Home as an outlet for their emotions

In addition to general use of Google Home commands mentioned earlier (telling time, listening to music and setting alarms), we encountered a surprising yet beneficial use of the device. Several clients grappling with behavioral challenges, of- ten struggling to manage their anger, surprised us with an inno- vative approach. Rather than directing their frustration at care- givers, some began using Google Home as an outlet for their emotions – an unexpected twist. When confronted with anger, they would direct their frustration towards the device, in a sense "venting" through it. This unconventional adaptation intrigued us, prompting further investigation. The consistent explanation of why they used Google Home in this manner was striking: Google Home's consistently gentle and non-confrontational voice responses serve as a calming presence. This way people use Google Home to feel better when they're upset shows how technology can benefit them. It is a modern way to handle feelings, and a technological coping mechanism. Amanda loves music. She has many CDs and can spend hours in her bedroom relaxing and listening to music. Un- fortunately, her CD player has broken and repairing it is not possible. Additionally, CDs are no longer the standard for music consumption. Streaming music via apps like Spotify or Apple Music has become the norm. However, using a smartphone for streaming music is not feasible for Aman- da. She faces challenges with reading and writing, making the use of a smartphone or a music streaming app too com- plex. Collaborating with Amanda, we explored more acces- sible options for streaming music. The Jooki Music Player emerged as the optimal choice. This player enables users to link songs or playlists from Spotify to RFID tokens. Thanks to the tactile tokens and user-friendly buttons that are eas- ily clicked into the device, Amanda can now independently stream her favorite songs. Practival example of consumer technology

In our three specialized technology labs clients, healthcare professionals and other visitors can try and experience the pos- sibilities of various technology products. The Speech Lab offers an opportunity to explore voice-controlled devices and room interactions. The Inspiration Lab replicates a domestic living environment seamlessly interwoven with technology, enabling individuals to acquaint themselves with a diverse range of inno- vative products and technological solutions available. The Mak- ers Lab serves as a space for crafting ad developing tailor-made solutions. Visitors can experience the value of having bespoke solutions made for a specific problem or personal challenges. The technological solutions to enhance self-sufficiency can only be successful if a client-system is involved. A client-system often exists out of parents, caregivers, and other healthcare professionals such as an occupational therapist or a behavioral expert. The solutions, no matter how big or small, needs to im- plemented and become part of a person’s life and routine. By sharing success stories and best practices, we not only inspire healthcare professionals with practical insights but also create a sense of purpose and enthusiasm for including technol- ogy into their care approaches. The healthcare sector is changing. In the foreseeable future there will be less caregivers available for the amount of care needed. As professionals witness the noticeable impact that technology has on the well-being and self-esteem of their cli- ents, they are more likely to embrace change, adapt new tech-

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niques, and collectively contribute to the advancement of tech- nologically driven healthcare for all.

The road to independence. In a world where technology seamlessly is part of every facet of our lives, those facing complex needs find themselves dealing with many obstacles. The journey to overcome these obstacles has many sides, requiring innovation, a creative view on tech- nology and determination to bridge the gap between limita- tions and opportunities. The journey to independence is ongoing, as technology con- tinues to evolve and inspire. Although it may seem that finding solutions for the most complex personal challenges is impossi- ble, especially for those with a low cognitive development and a visual impairment, it's essential to approach technology with a mindset of creativity and possibilities. Because when we do this, no challenge is too great and with the right tools and determi- nation, no mountain is high enough!

Products mentioned in article: • ClearReader Basic • PennyTalks voice lableler • Audio Motion Sensor • Jooki Music Player

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