A Board Member Perspective
Bert C. Tjeenk Willink
JoyDew Foundation is an organization dedicated to providing employment opportunities to adults with Autism Spectrum Disorder (ASD) who may not be able to operate in traditional work environments due to sensory integration or other issues related to ASD. Many of these adults possess sensory acuity that is above average with the general population. By providing specialized job training and Autism Friendly environments in which to work, we give them the chance to learn, grow and ultimately become productive contributors to society.
Presently, in the USA, over 9 million individuals have been diagnosed on the Spectrum and the incidence has been growing in double digits for the last decades. About 80% of these individuals have some level of communication challenges.
Teenagers on the Spectrum usually go to special schools in the USA. The costs for such schooling, some US $100,000 per annum, are borne by the states. Unfortunately, programs are more aimed at behavioral modification rather than at developing the individuals’ unique abilities – an attempt to prevent them from displaying ‘inappropriate’ behavior or from making unwanted sounds. (note: the government direct cost is $100,000 a year from diagnosis – usually 2-3 years old, along the life span of the person on the spectrum).
By the age of 21, the states stop paying for special education (individuals on the Spectrum then move from the Education System to the Welfare System). As a consequence, many times, one of their parents has to sacrifice a career to stay home to take care of the adult. Though such individuals are much loved, the situation then becomes an economic burden to the families in addition to increasing the psychological burden on the adult and the family. This phenomenon is called ‘the 21 Cliff’.
At JoyDew Foundation, we prefer to regard adults on the Spectrum as an untapped resource, rather than as a burden. Many, if not most, of them possess special, unique, yet underdeveloped talents and abilities.
JoyDew Foundation founder and CEO Moish Tov and a former colleague from the Israeli army started to focus on these special capabilities. They asked themselves what would happen if these could be developed. The special capability they most often encountered was exceptional visual capabilities, usually in the form of pattern recognition. Individuals with such special capabilities were identified and a program to further develop these skills was implemented and a pilot with 12 individuals was started. The participants worked on the analysis of aerial and satellite images for the Israeli Defense Forces (though Moish and his wife Anat Klebanov have become US citizens, their roots are in Israel). The pilot showed that participants’ abilities far exceeded those of ‘normal’ individuals.
The lives of the participants in the pilot and their families were fundamentally changed. Many not only started to communicate, but also became more balanced, happier, more independent, were able to go to their offices independently. Many indicated that they felt respected for the first time in their lives. They became productive. They started generating income rather than being an economic burden. Families could go back to work, improving the economics even more. The existing psychological burden was relieved. Quality of Life of participants and their families improved significantly. Meanwhile, the IDF employs over 100 adults on the Spectrum as full-time soldiers.
Our story in the USA started when JoyDew Foundation founder and CEO Moish Tov and his wife Anat Klebanov, who have two adults sons on the spectrum, observed that their non-speaking children started to communicate using iPads. Thus, the idea of a different format of education was born. Meanwhile, in cooperation with a number of specials schools in the area and through partner programs, we have equipped hundreds of children on the Spectrum with iPads and the results are impressive. Though sometimes in need of assistance in terms of motor coordination, by far the majority of them actually start to communicate.
Moish and Anat also decided to use the pattern they had encountered in Israel to address the profound societal need (the 21 Cliff) encountered in their new backyard of Ridgewood, New Jersey. JoyDew Foundation was born. Once more, because of the prevalence of such capabilities in this group of individuals, particular attention was given to visual capabilities and pattern recognition. This time around, the focus was on early detection and follow-up of breast cancer. JoyDew Foundation’s first US-based pilot had young adults working on radiological imagery from a nearby clinic. Once more it turned out that their abilities by far exceed those of regular trained medical staff.
Today we are in a growing phase of our first Location in Midland Park, NJ. The concept roughly is as follows:
Adults on the spectrum are identified. JoyDew Foundation’s focus is on individuals on the entire spectrum and we believe that 80% of the adults can enter the program.
JoyDew Foundation developed a Strengths Assessment Tool which enables us to identify any special capabilities of Members. The process of Strengths Assessment is continuous, i.e. we continue the evaluation all along Members’ participation in the program.
Specially designed and Autism-friendly environment:
Since it is difficult for many on the Spectrum to function in a traditional work environment, participants are invited to come to our premises, which are autism-friendly with trained support staff. JoyDew Foundation also offers transportation, if required.
Basic skills training and identification of special capabilities:
Once participating individuals (Members) are in the program, the initial focus is on basic skills, like communication (also using iPads) and basic computer skills. In parallel, we investigate what special capabilities each individual has (Strengths Assessment).
Special skills development:
Once special capabilities have been identified, such strengths are further developed. In the beginning we focused on the often encountered exceptional visual acuity. So, with the generous support of a major corporation, our first group was trained using specialized equipment to work on a large set of radiological images from a local New Jersey clinic.
Work for third parties:
All work is performed virtually, from our Autism Friendly locations. This model enables us to overcome the hurdles potential employees on the Spectrum encounter while looking for a job. So, in the case of breast cancer pre-screening, once their capabilities have been sufficiently developed, Members start working on actual, current, images. Their efforts are being paid for on a per image basis. In effect, they do the pre-screening for the radiologists and all images are ultimately judged by a credentialed professional. Image identifiers are encrypted so the identities and medical records of the patients are safeguarded.
The impact on Health Economic and Outcomes parameters is stunning. For every successful Member experience, we not only mitigate the cost of special training (roughly $100,000 p.a.), or the alternative – a parent giving up their employment to take care of the person with autism themselves, but our Members actually can make money. Early results indicate that a successful Member can earn as much as $ 50,000 p.a. Moreover, the highly significant impact on social wellbeing and Quality of Life transforms the lives of such Members and their families. JoyDew Foundation works together with the University of Groningen, the Netherlands, to ensure that we capture the Health Economical impact of our program, including Quality of Life, in a scientifically robust fashion.
Central to the Vision of JoyDew Foundation is the requirement that the program must be scalable so as to ultimately address the entire population on the Spectrum. Therefore, we are in the process of developing additional approaches for those with different special capabilities such as a special gift with numbers that can be applied to financial services. We have started to train our Members in Robotics, Pattern Recognition, Big Data Integration and Digital Content Management. Pilots are being set-up in a number of high value employment areas like large content management, bookkeeping, and the prevention of money laundering.
Without exception, all Members in the program so far have made remarkable and sustainable progress in communication, behavior regulation and their ability to develop their capabilities. The reality however is that not all Members attain the ultimate goal of gainful employment. The JoyDew Foundation path to employment consists of progressive building phases that are interconnected in both directions. If someone doesn’t make it to the next level, they can remain in the Program, so that in the end, we also have a Continued Education function. Once an adult becomes a member, he or she is in and, while aiming at gainful employment as the ultimate goal, we do not drop those who need longer to get there or in the end, for whatever reason, just don’t make it.
JoyDew Foundation’s initial launch was made possible not only by huge contributions and sacrifices on the side of Moish and Anat, but also by many smaller donations from individuals, usually connected to a person on the spectrum. Current regulations do provide options for government compensation for Job Training and Continued Education, but unfortunately not for habilitation. JoyDew Foundation has been successful in tapping into a variety of funding sources including local and federal government (Medicaid). Furthermore, we continue to receive individual donations to the foundation.
JoyDew Foundation is organized as a combination of a non-for profit 501 (c) (3) foundation and the newly established JoyDew Foundation LLC (for profit). The Foundation has created and further develops the program, safeguarding the quality and philosophy of its approach. The JoyDew Foundation Foundation utilizes and improve the Intellectual Property and know-how created within the organization. Employment takes place within JoyDew Foundation LLC in order to separate the money flow from governmental institutions to the Foundation. JoyDew Foundation ensures that income for Members does not exceed the US compensation p.a. limitation, thereby safeguarding individuals’ Medicaid medical coverage. Excess income flows back to the Foundation in the form of license fees and royalties and is used to further develop the organization and the program.
Our first operation is running cash positive. Even in these challenging times of COVID19, we continue to remotely operate full-time. The computer-based nature of our approach offers ample opportunity to enable this. In fact, we are currently growing as demand for our services is soaring, despite the pandemic. Our Members and their families even under sequestration are maintaining their higher than average Quality of Life. Having said that however, the reality of course is that our Members remain at home. Thus, the quarantine presently prevents us from reaping the renewed employment benefit for the entire family.
JoyDew Foundation is fortunate enough to be able to operate from a modified home in a residential neighborhood. With the support of a befriended architect, planning is in progress for designing a new ‘flagship’ location. This will be a purpose-built location having the character of a campus for our Members, including opportunities for (semi) independent housing on the premises.
The JoyDew Foundation vision is to expand our program over the entire USA. For this purpose, JoyDew Foundation will deploy a franchising (or other) model with the foundation administering program development/direction while maintaining quality control over all operations. Critical to successful realization of our vision is strict adherence to the original JoyDew Foundation approach: the unwavering belief in the special capabilities of those on the Spectrum and our ability to develop such capabilities and an ethical approach to generate employment opportunities for adults on the spectrum, thus providing them the fulfillment of becoming productive members of society and relieving pressure on their families and communities. Long term, there is no reason why the JoyDew Foundation approach would not become a global effort. Autism is a global issue and we already have proven our case in two countries.