Frasil Group: Empowering Lives to Connect & Engage on ‘Their Terms’

The notion of traditional digitization is converting information into computer readable formats. The problem is this notion makes the assumption that everybody fits into one category and can all read and master this digitization the same way and in the same manner. This couldn’t be further from the truth for most people let alone people living with disabilities (PLWDs). Frasil, the market leader in the disability market, has achieved many amazing things but perhaps the most amazing is its current ability to take the individual vocal noise (normally in the form of a grunt of a person who is locked in) and turn it into their personal voice. Frasil to date has managed to remove the echoing and robotic noises and is now starting to allow PLWD to send their “voice sound” in so they too can tell the world who they are in their own unique voice. What a noble work to do than giving someone their voice? 

A humble beginning

Fran Killoway, Founder and Executive Chairman laid the cornerstone of Frasil 10 years ago, when her dear friend was diagnosed with MND and lost the ability to speak. Though there were numerous products that could address the issue, they were either expensive or did not work the way they were supposed to. Fran took it upon herself to create a product that could help her friend interact with the people around her. But, before the product could be built entirely, Fran’s friend passed away. Since then, Fran has been on a mission to help those in need and develop a humanoid companion, which could be there for them all the time. Prior to establishing Frasil, Fran spent a decade of her life gaining knowledge in AI through associating with BCG on AI theories, a large US Defence company, Oracle and other large multinational corporations. But amidst her thriving career, she took a three-year back from her corporate life owing to personal reasons. When she returned in 2010, Fran aimed to translate her knowledge on AI to build solutions that can improve and enhance the lifestyles of PLWDs. By committing herself to the mission and spending the next four years of her life in various research programs, she established Frasil in 2014. Frasil was built to commercialize the AI Technology and render solutions for PLWDs, disability service providers and 24/7 research for other stakeholders including the government.

The best way out is always through

Fran Killoway’s background in AI and ML coupled with neural networking is not traditional and it is hard for people to believe that this 68-year-old female has brought such change to traditional computer logic and then added the complication of making the AI and ML work for most PLWDs. And yet Frasil exists today. But it wasn’t an easy row to hoe for Fran. She faced many challenges along the way. Fran had to remain respectful in circumstances where Frasil still needed assistance in bringing the product to market and the investment needed to do that or risk not getting Frasil to market. Fran was never able to challenge the existing industries expertise because people simply refused to accept that this different presentation of intelligence could be achieved. But her commitment to the mission and passion to help others allowed her to overcome the challenges.

This scenario was further exacerbated by Fran’s limited front end knowledge of computers, software and Apps. While it is true that she can look at a screen, and ensure that it has the right message, it did not follow she knew how to turn the screen on or navigate it properly. Fran became known for doing things back to front and upside down. This talent allowed her to understand that people living with disabilities have a need to have their individual messages delivered in many different ways.  The final hurdle was then realizing that all or most technology professionals are educated, in a very similar way and in the same school of thought, presenting beautifully designed screens that look pretty with lots of color. This process does not necessarily work for PLWD unlike her black and white screens. In the end one of the things that Fran looks back and laughs at the most is her struggles in trying to get simple black and white screens. One of her longest supporters over 20 year, Dr Thomas Reichert, Global Practice Leader, BCG, New York kept insisting that Fran trust her instincts.

Technology is Frasil’s business. But Fran is very insistent that the business controls the technology by not allowing the technology team to control the business. That means preventing the technology team making the decisions and choices as to how the technology should be presented rather than listening to the needs and wants of each PLWD. Fran says that this was and continues to be an enormous challenge. Predicated on the basis that technology people consider themselves the experts and they continue to believe that they are the only ones who can have an input into the design of the computer system, let alone accepting the needs and wants of PLWDs which are significantly different to the normal designs applied by these experts. The overall impact was the additional time and cost in wasteful time consuming meetings resulting in lost market opportunities and in delaying getting the much needed technology to market for PLWDs.

The journey of listening, learning & discovering their needs and wants

Fran has spent a decade towards listening and learning from people living with disabilities and discovering their needs and wants. The last few years have involved research & development and testing with people living with disabilities and disability organizations around Australia. “The R & D program managed by Innovation and Science Australia has been fundamental to the development of Frasil.” acknowledges Fran. In addition to this, Frasil innovates the enhancements with every product, giving them an edge over their peers. This is possible by allowing the marketplace to upgrade the functionality of the App. After the release of each product, Frasil keeps keen attention on the feedback of the users. Based on these feedbacks, Frasil releases enhancement that is cutting edge and will have the ability to cross over into mainstream programming. Building something that does not exist and forecasted by many as impossible requires constant analysis of the product and implementation of suggestions by users. This is an approach, which has kept Frasil consistent for the last 10 years. Incorporating these upgrades also portrays the hurdles that Fran has had to overcome in getting Frasil to the market. After completing a commercial proof of concept, Frasil has spent the last 12 months engaging with Deloitte Australia to build the industrialized version to allow for global agility, scalability and robustness. Deloitte Australia has delivered Frasil on a ‘Microsoft Azure’ enabled solution, which proffers a centric and unique search engine. The software has a track record in providing the much needed scalable, robust and secure platform for global deployment for hosting leading neural networks, AI and ML technologies.

Filling the gap where there is a shortfall of support workers

Frasil is a new breed of technology service provider and its vision as a service provider is to reduce isolation, and in most cases to fill the gap when there is a shortfall of support workers. Fran believes it is important to keep the cost of the product to PLWDs as low as possible because as PLWDs master new tools offered by Frasil, their demands increase. Frasil has a large development pipeline and technology in reserve ensuring it remains at the cutting edge and ahead of the demands of its users. Today, Frasil is the market leader in the disability market and will retain its cutting edge because it respects the products and services all of its competitors. Frasil currently offers free real estate to all competitors because in a lot of cases PLWDs are habitual. However, Frasil finds that most competitors offer one size fits all solutions and in most cases these single point solutions are expensive and can be very complex to use. Fran’s backwards and upside down way of building Frasil’s neural network, AI and ML ensures that Frasil continues to endure because of the markets reluctance to accept that PLWD have different wants and needs that need to be delivered on a low cost platform.

Creating the organizational and cultural DNA while moving forward

Frasil runs a very small team consisting of successful and strong individuals. As a leader, Fran’s responsibility is to make this unique collaboration work ensuring that the skill set of each team member is heard. This collaboration provides strategic and operational leadership that sets Frasil’s goals, develops strategy and ensures the strategy is executed effectively. But equally important to Fran’s leadership is to create the organizational and cultural DNA for Frasil going forward. This collective leadership and how its members interact serves as the model that ensures its users, PLWDs, are heard and respected. “When you hear a PLWD who is locked in, regardless of their age, tell a person they care about “I love you” it is generally unapologetically authentic. Their hearts are sincerely pure and it radiates out of them in unbelievable ways. As Frasil’s team, on all levels, experiences this kind of interaction it is hard to describe how wonderful and motivated you feel as most of us don’t interact on a daily basis with PLWD. The communication that Frasil offers a PLWD and their carer is hard to describe,” shares Fran.

Passion that fuels motivation to build and implement solutions for the PLWDs

Fran truly enjoys her work and the people on every level, and therefore she never think of it as a personal and professional life balance. Although she believes that equalizing between personal and professional life is an essential requirement, she says if one is passionate about the work he/she does, the line separating the two hemispheres disappears. Fran is very passionate about ensuring PLWDs have the same opportunities, like the rest of the world. Henceforth, her passion fuels her motivation to build and implement solutions for the PLWDs. This identical motivation is also instilled inside the other employees of Frasil. Throughout its professional journey, the Frasil team has shown great passion, persistence and perseverance. Everyone in the team shows the same zeal as their leader to achieve one single purpose: highlighting people living with disabilities. The driving motivation has always been towards the users; their willingness not to judge and give life a go even after living with disabilities. This unbroken posture of the users is what makes Frasil deliver the best product for each person with a disability.

Giving people with most disabilities the access to the world

Frasil has recently started to reach out through social media and has the opportunity to reach 1,800,000,000 people. The size of the disability market is enormous (over 1 billion people) and a major growing issue for governments around the world. Frasil has a long pipeline of developments to provide greater functionality of its App. Additionally Frasil is developing a ‘Management Software’ for organizations concerned with PLWDs. The software is aimed to provide management with greater insights into the needs of their clients and the effectiveness of their services. Furthermore, Frasil is starting to work with property developers, government, BCG, Deloitte Australia, PwC and corporate stakeholders looking to employ PLWDs to build smart buildings for PLWDs to encourage independent living and provide training to PLWDs to become better employed. Fran believes these kinds of initiatives will save governments billions of dollars over their forward estimates. Notwithstanding, over time, the data Frasil will collect from these initiatives will be extremely valuable to the government and other decision-makers regarding the effectiveness of funding and the solutions to be offered to allow PLWDs to show what they have to offer. This data adds additional billions of dollars of savings in the cost of programs while resulting in procuring better services for each person living with disabilities.

Frasil and Fran have won 6 international awards till date. But in the end, everything Frasil does is for and about people living with disabilities and assisting service providers and support workers, family friends and carers. Fran’s philosophy is that people are just people, and wherever possible, Frasil tries to give people with most disabilities the same access to the world that others take for granted.

Grace and Her Story

On the 11th December 2015 the precious one, Grace was born. She was healthy and perfect in her parents’ eyes, and they were all besotted with their new pink bundle of joy, especially her two proud big brothers William and Oliver. The first few months everyone watched with excitement as Grace cooed and giggled, smiled and started to roll. At around 4.5 months of age, Grace got a virus and from that time she started to go floppy. No one really had any idea about the journey ahead.

When Grace got to 6 months of age, she was unable to sit up and at 8 months she was clearly behind in her milestones. There were some real concerns and fears for what was laid ahead. Within the week of seeing the pediatrician, Grace was sent to a Neurologist, and what followed were lots of blood tests, 2 MRI’s of her brain, an EEG of her brain to check for epilepsy and a spinal tap, which still didn’t lead them to knowing what was wrong with their daughter. “For us as her parents, living with such uncertainty and not knowing how to best help her was devastating. We felt so helpless. It was and still is an emotional rollercoaster for us all.”

In 2018, their Neurologist at Westmead Hospital suggested to do the Genome sequencing for movement disorders. After an agonizing year of waiting, when Grace was 3.5 years old, they found out she had a rare genetic movement disorder called ADCY5- Related Dyskinesia. Grace’s disorder has a prevalence of less than 1 in a million so she is a very “rare gem.” 

Grace is faced with significant daily struggles as she can’t sit, stand or walk independently. She needs full assistance with Personal care and assistance with eating. “She and we face these struggles with trying to get equipment to help support daily life. Grace needs a wheelchair to help mobilize her around, and even getting this for her has been a struggle.” Grace’s intelligence is not affected by her disorder and she is a very social 4 year old little girl who attends a normal preschool. She wants to be able to engage with her peers independently and a motorized wheelchair would give her this freedom.

“It is difficult to get wheelchair trial appointments, and the need for lengthy and costly reports to be written up for the NDIS to justify why your child, who is not mobile, needs a wheelchair, is simply frustrating and upsetting to us as her parents. You can wait up to a year to get a wheelchair which is a basic need for someone who is mobility impaired. “

“It is made incredibly hard for the carer to access the right equipment for their child. Eg, The NDIS Arguing that your child does not need a stander, as they have a walker, when they are two different pieces of equipment with different functional uses, is ridiculous. Access to equipment needed for day to day life, should be made easier for people with disabilities.”

Grace’s disorder causes her to have episodes of abnormal movements that are triggered when she gets sick, tired, anxious, stressed, does too much exercise, or is frustrated. It also causes muscle fatigue making daily activities extremely difficult.

Grace is an amazingly determined little girl who never gives up. She attends weekly Physiotherapy, Occupational Therapy, twice weekly Speech Therapy, Feldenkrais and Conductive Education. She also attends Intensive Therapy Sessions at NAPA (a neurological pediatric therapy center) when possible.

Grace is improving all the time, gaining strength, increasing her vocabulary and making significant gains in mobility. She has started on a caffeine trial, after a young boy in France was treated with caffeine which ceased his dyskinesia episodes. Caffeine has been very promising for Grace and has improved her fine motor skills and helped her have more control of her dyskinesia, improved speech and endurance.

“One of the most exciting advancements we have seen in Grace since starting on the caffeine has been her speech, she is trying so many new words and sounds and has more natural speech. We are constantly looking at ways to give Grace more independence but her ADCY5 can make one day to the next, variable for Grace. On the days that her body is difficult for her, with movement episodes, so is her speech.

She had been using Proloquo2Go as her Augmentative and Alternative communication (ACC) and navigates it well, however she does need to go through numerous folders to express her wants and needs to me, which sometimes means she gets frustrated. “The program also only offers limited choices. Eg. If she wanted to wear a dress for the day she is able to indicate this, but not the particular dress that she wants to wear. We have recently discovered that Grace is able to read a little.”

Grace has been very fortunate to Trial Frasil an ACC app that for the first time allows her the ability to communicate on her terms, in her way. Grace is able to express her wishes and needs to her parents with sentences she constructs in “my voice.” For example, with just one click of a button she can say “I love you mummy.”

The app will also be able to let Grace, and her family, hear her actual voice when she uses it to communicate; this is absolutely phenomenal for everyone around her! Grace will be able to have more choice in what she wants to eat, wear, and activities she wants to do. Eg In choosing what she wants to wear each day as she will be able to have photographs of her wardrobe and pick exactly what she feels like wearing. She will absolutely love the autonomy this will give her. This will be sent as a text message to us or her carers.

The “My Entertainment” section has become her favorite one! Here she is able to select what, when and how she wants to watch a TV show, YouTube and live streaming. She loved reading a book on the live ABC stream including being able to turn the pages herself! “Frasil for Grace means she can be her own person, and communicate what she wants to say and how she feels. Frasil will allow people with disabilities to have a voice and this is so empowering! We know that through giving Grace access to tools like Frasil she will continue to Amaze us.”

With Frasil, Grace will be able to live a life she wants to and her story will inspire millions around the globe with disability to never give up. They will be able to ‘make the change’!