Collaborative SRV-Based Assessment Report
19-24 May, 2024
FARE: Foundation for Autism Research and Training Chattogram, Bangladesh
Background
The Foundation for Autism Research and Training (FARE), has a strong history and partnership with Keystone Institute India since 2018, through active engagement with training in Social Role Valorization and other topics related to inclusive practices. Our involvement together began with a two-day workshop on Best Practices in Residential Services in Kolkata, hosted by ASWB, that was attended by Dr. Fahmida Islam. This opened up many opportunities for learning and growth on all sides. FARE has coordinated all sorts of training within Bangladesh on SRV, has introduced the ideas across the country through workshops and seminars hosted by FARE and taught by KII. Six Bangladeshi leaders have had high-level, in-depth training in SRV, thanks to the efforts of FARE, and they have 1 staff member (Rezwana Darain) and 2 Board members (Mr. Abul Hussein and Dr. Fahmida Islam) who have attended SRV 3.0 and 4.0, respectively. Over the years, FARE has sought partnership and assistance in adopting these ideas and putting them into practice. FARE staff and associated parents have attended many on-line trainings, as well, and take strong participatory roles in the All-India SRV Alliance, which in fact includes FARE as essential and active members fact, this commitment to learning and growth is exemplified by the sheer volume of ideas that FARE leaders have been exposed to. Most recent accomplishments include Dr. Fahmida Islam and Ms. Rezwana Darain achieving master trainer status in the Foundations of Direct Support training program. They have had exposure to some of the global leaders in SRV and Inclusive practice. Selecting FARE as a partner in this evaluation was a natural fit, and we are grateful and humbled that FARE trusted us enough to allow us a glimpse into the program, the lives of the people who come to FARE for service, the families, and the staff. This is a responsibility we take seriously. FARE and KII share a set of values and principles which drive us as organizations, and we believe in the work FARE has done. In 2023, FARE completed a strategic planning process known as PATH which involved families, board members, teachers, students, and allies with the facilitation of the KII team.
Purpose of Collaborative Assessment
This supportive evaluation is solely for the purpose of sharing ideas that we believe could move the organization forward towards next steps. It is not intended to punish, scold, criticise, or chastise
anyone within the staff, the families or the people served. As we share recommendations for change and movement, please be aware that these are only recommendations. It must be remembered that we visited for two days, and our recommendations are based on those two days of interviews and observation. We are by no means experts on what happens at FARE on a dayto-day basis, what should be done, or even what can be done. However, new eyes may uncover new possibilities, and spark continued growth, renewed vigour, and even new directions contributing to better, fuller lives for the people currently attending FARE. At the same time, practical considerations and the broader awareness of the people may cause FARE leadership to decide NOT to pursue certain suggestions, for very valid reasons. The recommendations in this report are made in the spirit of “more and more like this” rather than this must or should be done. A brief overview of recommendations was presented to the FARE senior leaders on 24 May, but this report is a fuller and deeper coverage of our observations and recommendations.
We hope that our recommendations are reflected on, discussed, and that decisions are made about what will be taken forward. Should decisions be made to implement any or all, we are more than willing to assist and collaborate.
The team was formed with great care. Dr. Manisha Bhattacharya (Kolkata), Ranjana Chakraborty (Kolkata), Shabnam Rahman (Kolkata), and Elizabeth “Betsy” Neuville (Pennsylvania, US and Delhi) composed the assessment team. All have a good deal of experience with SRV in the Indian context, all are teaching and using Social Role Valorization within India, and all are members of the All-India SRV Leadership Alliance. Ranjana and Manisha participated in an intensive 5-day event in the United States teaching to learn SRV-based evaluation techniques and co-authored an evaluator’s manual. Psychologi8st Shabnam Rahman has been working to study and use SRV and is an emerging SRV leader in India. Betsy Neuville has extensive experience conducting SRVbased assessment in many countries and in India and served as team leader for this collaborative process. As has been said, we present this feedback with everyone’s understanding that we only spent two days at FARE and a few hours interviewing families and leadership. We cannot possibly know the people and their needs in the same way as families and staff.
This report is solely for the use of FARE leaders (Dr. Fahmida Islam), and may not be shared or distributed except as directed by those individuals. Assessment team members signed confidentiality agreements, and fully understand that the staff, people served, and their families shared information about themselves and their lives which we consider to be a privilege and an honour to listen to and learn from and implies trust and responsibility which the team takes seriously.
Overview of The Collaborative Assessment Process
SUNDAY The team gathered on Sunday, 19th May for our first meeting to review the tasks before us, the schedule, and the duties of team members. As well, we worked closely on this day with FARE staff to assure everyone was prepared for the next two day’s activity. Fare did an excellent job organizing the visit seamlessly with as little disruption of regular activities as possible.
MONDAY Site Visit: The entire team arrived at the program at 8:30 am to get a brief tour of the program and begin to observe program activities, including classroom observations. At 11 am, the informational interview with Dr. Fahmida Islam Chowdhury, Mohammad Abul Hussein, Nasima Rahman Chowdhury, Ms. Nurjahan, Rehana Riffat Chowdhury, and Rezwana Darain was held, gaining valuable insights into the program history, operations, and even a deeper look at individual students, their strengths, interests, and program foci. We resumed observation and visiting classrooms through the rest of the afternoon and reviewed selected IEPs and program records. The evening was spent in a debrief and planning for the next day.
TUESDAY Site Visit: The team arrived at the program at 9 am, and the team divided, with three parent interviews conducted, while program activities were observed. In the afternoon, the team participated in and observed the canteen activity. After this, interviews with three staff persons (2 teachers and caregiver) were conducted, while observation of the afternoon activities were conducted at the same time. At the close of the school day, a meeting with board members Mr. Zafar Alam, Mr. Mohammad Abul Hossein and Mr. Muhammad Mahabubul Hoque Khan and several staff persons was held to discuss the latest new building plan, In the evening, we began the Foundation Discussion.
WEDNESDAY Analysis and conciliation: This day was spent completing the foundation discussion, identifying needs, and beginning to finalize recommendations. The late afternoon was spent touring, visiting the new building under construction, and exploring Chittagong with the hospitable FARE team.
THURSDAY The team focused on preparing feedback, nuancing the recommendations, preparing visual feedback presentation, and writing this report.
FRIDAY One this day, the Assessment team met with representatives from FARE, including Mr. Mr. Mahabubul Khan, Dr, Fahmida Islam, Riffat Chowdhury, Nur Jahan, Nasima Rahman, and Mr. Zafar Alam, among others, to deliver overall feedback, augmented by slides. A discussion followed, and the meeting concluded, followed by a brief consultation on residential services and supported employment set-ups. The team departed at 2:30 pm, with appreciations.
Themes of Note
FARE is a recognized leader across Bangladesh and outside as a leading organization supporting people with autism. As they have developed and grown in their understanding, they have also been making serious plans to relocate to a large building currently under construction. This is a excellent time to solidify their SRV grounding, tackle some of the more complicated aspects of SRV practice, and get some firm footing for the what is now the vocational program operating at FARE. It is evident that as the students age, the end point seems to be the senior classes, causing an increasing number of participants in those classes, with little chance to move forward and out of school. FARE is seeking ways to advance this class into new possibilities.
As we engaged in discussions, we note several themes that emerged that are central and important in the development of FARE, and at the forefront of the minds of the staff.
1. The path towards work, employment, and vocation.
2. Building SRV as a foundation, and integrating methods used by FARE (ABA, structured teaching, VBA).
3. “What’s next?” remains a question in the minds of everyone.
4. Integrative community engagement at FARE has decreased since COVID.
Who are the People; What do they Need?
As noted in the schedule, the information gathered from both the site visit as well as all the interviews with leaders, teachers, and families informed a Foundation Discussion. This lengthy discussion covered seminal questions about the identity of the adults and children served at FARE, their life experiences both described by staff and families, and discerned by the team, their needs which stem directly from those experiences. By naming needs, this does not imply necessarily that they are not being met, only that they are extraordinarily important to the people. Although we did identify numerous other needs, the team feels the one listed below are the most important and pressing.
Needs of students (Under 18 years):
1. Exposure and access to general education
2. Access to co-curricular activities with typical children
3. High expectations for accomplishment with precise individualization
4. Lots of positive roles – sibling, student, classmate,
5. Autonomy, choice and a bit of risking “Healthy stretch”
Needs of Adults (under 18 years)
1. Individualized work
2. Lots of life experiences (explore and discover)
3. Valued Social Roles- lots of them, big and small
Major Programmatic Strengths
First, we note the powerful strengths we saw, which serve as the foundation on which moving forward can be built.
1. A Learning Organization
One of the most strengths we note is the commitment of the organization to learn and change. From their beginnings 14 years ago, the founders saw what was wrong within the existing services, and recognized isolation, segregation, and abuse as unacceptable not only for their own children, but for all people with autism. They began to connect with learned, experienced change leaders from across India and beyond, and integrate those ideas into practice.
We found a rare and exciting difference from many other organizations we see - a determination, will, and ability to share good ideas across the organization from top to bottom. In particular, we heard SRV ideas echoed from the Board Members to the leaders, to the teachers, to the families, and to the caregivers. It was extraordinary. At one point, one of the assessment team members was discussing an SRV- related idea with a staff person, and a teacher interjected, as only an “SRV savvy” person can, “It’s a mindset”. Indeed, that simple identification of an SRV theme in a teacher’s mind is the product of both organized sharing and teaching of ideas in Saturday sessions, and informal sharing among all. Indeed, we can say that Social Role valorization is the air at FARE, and all are breathing that air. This kind of enculturation of powerful ideas is a rarity. Many organizations provide and attend “training for training’s sake.” FARE does not.
We were especially moved by our interview with Caregiver Ms. Rina Chakraborty, whose deep identification, level of engagement in her work, and commitment to the children and adults she serves is the direct result of the culture and atmosphere of FARE.
2. Obvious Positive Change due to SRV Exposure
The changes FARE has made due to their SRV commitment are visible and stand out. We can truly say FARE puts ideas into practice in so many ways. From using the CVA to renaming classrooms in a normative fashion, to addressing imagery on a program van, to identifying full, meaningful lives as the actual goal of the program as just a few examples. They have worked to differentiate adults from children by providing an alternative age-appropriate activity *(working out in the gym) instead of attending morning Assembly, which is appropriate only for student-
aged children. In many ways, FARE serves as an exemplar. Perhaps the most impressive way that SRV has been used is the willingness to rethink proposed residential services until they have taken time to reflect, advice and support.
This takes courage - to decide to do differently than everyone else because of the values, principles, and knowledge that one holds. SRV practitioners across the world have often taken directions untrod by others, made different (more principled) decisions than most other organizations, and sometimes paid a price for this. Sometimes this can be an isolating and lonely road, and so we rely on each other for support and strength, for new ideas, and for expertise.
3. Rock Solid Trust in Leadership
Another very important program strength is the parents’ faith and confidence in FARE and its trusted, transparent, invested and competent leadership. The commitment of the organization to produce a completely non- abusive environment is evident in every sphere of the program. This has rightfully earned the trust of the families. Dr. Fahmida Islam is an exceptional leader who ‘thinks differently’ and assimilates the ideas which helps to move toward a meaningful life for the individuals FARE serves. The well-stated goal towards having a ‘meaningful life’ for the people has become the goal for all the leaders at FARE as well. The parents look up to Dr. Fahmida Islam to bring in ideas which are different and guide them with their children. All the families that we spoke to have unanimously expressed their trust, comfort, dependence on FARE and also shared how ‘safe’ they feel with their children here at FARE. FARE’s openness to share suggestions, the involvement of the teachers to empower the parents and the ‘try out’ new yet trusted ideas are the things that came up in our discussions with the families.
A parent- run organization under the guidance of Dr. Fahmida and supported by the leadership of Ms. Nasima and Ms. Riffat and by the teachers and staff who are associated with FARE have created a sense of trustworthiness among the parents. We understand that the loss of staff has been a problem, however, we met many staff who have been working at FARE for years and years and are deeply satisfied.
The leaders at FARE are extraordinarily invested, especially with the involvement of non-parent leaders. The credibility, dedication, reliability, and commitment in their own life spheres have not only earned the respect and trust from the families but also serve as great resources to FARE. We were impressed by the meeting with three board members to discuss the plan for the new building – FARE Multi-Plex. Every suggestion we mentioned was met with curiosity, eagerness, many questions, and a hearty “We will talk about this with the rest of the Board”. The networks and contacts that the Board members have in their personal life organically becomes FARE’s own support network. The energy, respect towards each other and the openness and flexibility to try new ideas make the FARE leadership more dynamic and create a task force that’s always ready to move forward.
4. Promising Possibilities
With the support of the competent leaders who are so invested in this project, raising funds has been less of an issue at FARE than with many other organizations. FARE leadership has never considered the students and the individuals as their ‘clients’, rather the leaders always strive for a good life for the students. The financial condition of the organization has never restricted FARE to reach out to other organizations for trainings or helping out the students and adults who cannot afford tuition.
With the new building coming up, FARE has a whole lot of possibilities towards opening the doorway to a more integrated, and meaningful life of the people they serve. The new space will provide FARE leaders the opportunity to start fresh and come up with ideas for new services which will integrate the individuals they are serving in community. Possibilities of employment, internship, part-time jobs for the adults; re-thinking the adult-services, creating new services can be planned before moving to the new site. An integrated, fully inclusive pre-school becomes a real possibility. FARE leaders are willing to consider opening up their state-of the art seminar space to other groups, a chance for both integration as well as opportunities for real employment for the adults for the first time. They are also willing to consider a guest house for visitors using the seminar space – another way to make money and employ some people they serve. Even considering opening up the new gym (with showers and a changing space) to typical people, to staff as an employee perk, and to the adults they serve before and after work was greeted with interest. These new ideas are in people’s minds as they overcome the final barriers to completing the building. The Fare Multi-Plex brings great promise, and requires a thoughtful and carful approach, which is well in evidence.
5. Potency and Relevance of Elementary Program
One of the program strengths we noted was the Elementary program of FARE. The program was made mindfully considering the strengths, interests and community needs of the children and family. This ensures that the curriculum is relevant and engaging, facilitating a positive learning environment. The content of the program was intense, focused, and well-timed. This means the program covers essential content in depth while also being delivered at appropriate developmental stages.
We were particularly impacted by the clarity of teachers that their goal is to either keep or return the child to mainstream schools and have had some success in doing so.
The potency of the program included three elements:
1. Time frame of sessions: The sessions were brief (2 hours), with student time being fully used in activities.
2. Time frame of overall program: The parent training program is time limited to three months.
3. Can co-exist with typical education: The timing of the program makes it possible for students to remain in regular schools in the morning, possibly preventing separation.
4. Academic focus: There was a sharp focus on school readiness and preparation.
This approach may facilitate students to receive a comprehensive “head start” that prepares them for future learning. Children and parents follow the lead of the teacher during sessions, providing an adult-mediated approach to learning, which is probably realistic considering the teachermediated approached most common in mainstream schools. We noted quite intense and enthusiastic structured teaching and VBA sessions, as well as other activities such as OT and Brain Gym. They were individualized, and the student time was used in a potent, and probably relevant way.
The program demonstrates transparency in delivering services by allowing parents to observe sessions and learn alongside their children. This open-door approach fosters a sense of collaboration between teachers and families, creating a supportive learning community. Teachers and parents strategically worked together to facilitate the learning process effectively and making the learning experience more engaging and rewarding for students. The collaboration between teachers and parents demonstrates a shared commitment to supporting students' learning and development. By working together, teachers and families can facilitate learning both in the classroom and at home, creating a seamless learning environment for students. We must also note that very few elementary students were present, especially in the parent-training program, because they are in-between three-month sessions.
6. Quality and Commitment of Teachers and Staff
FARE has high quality teachers and staff. The teachers are well-trained, hardworking, dedicated, high energy, and know a lot about the students. They know what works and what doesn’t work for them. The students were well settled in the classroom. The staff has amazing understanding and synchronization between them. It looked like a well-oiled machine where all the components knew what to do, when and how. This leads to a smooth delivery. Even the senior management like Principal, Vice Principal were always on the go. They were regularly seen in the hallways, different classrooms, therapy rooms. They have exceptional depth of knowledge and years of experience. We saw some amazing handholding between senior management, senior teachers and junior teachers. With new teachers with less than a year experience we saw how the senior staff stepped in and assisted, guided and mentored the new staff. This shows FARE’s culture of support. The culture is respectful and valuing. The teachers explained the process and why it was needed, instead of just pointing out the mistake or saying this needs to be done. When such a respectful approach is seen, it can be said for sure the same respect will percolate down to the students they are working for.
The staff has had extensive exposure to world-class training from Singapore, India, Sri Lanka, US across areas like early intervention, Structured Teaching, Verbal Behavior Analysis, Speech Therapy, Music Therapy, Occupational therapy, Social Role Valorization. Narrative Therapy and so many more. They have worked extensively over the years with Ms. Indrani Basu (Autism Society West Bengal), Merry Barua (Action for Autism) and other leaders, including leaders at KII. The staff have had repeated exposure to visit different organizations across India, abroad to observe, know, understand and slowly implement them back at FARE. This system of observing, learning and implementing has been mastered by FARE. These knowledge and implementation of good practices helps FARE be the leading-edge organization in Bangladesh. In addition to that, the top management has a robust understanding of the ecosystem of disability in Bangladesh. They are aware of all the laws and acts that will, if fully implemented, make life better for people with disabilities.
The diversity in staff background really stood out as a strength. We met staff who had backgrounds in music, engineering, marketing, computer, and fine arts. This careful and focused selection of staff from diverse fields contributes a great deal to the staff quality and competence. So having a balance between trained Special education teachers and teachers from different diverse backgrounds helps so much in offering a rich e ducation experience to the students and adults. For example, having a skilled Fine Arts practitioner in the Senior section for jewelry design and conception, or computer teacher for ICT in the Tech Hub classes is the best idea.
The top management’s humble and brave approach, open to ideas, stood out. The management is ready to accept and remember the mistakes they made in their formative years. This serves as a constant reminder to other organizations ‘what not to do’ or ‘what works best’. The ability to assess the services internally, work on them and, if things are not working, shift gears to something that DOES work is what FARE has been doing for 14 years. They don’t just depend on one source of knowledge or guidance. This ability to try out different things, check the potency and accordingly adapt them is an enormously important competence that FARE possesses.
Seven Overarching Recommendations
Please be aware that these recommended pathways forward are not prescriptive – we do not have a checklist, or a particular process FARE must or should or ought to follow. Instead, they do outline a “big idea” for FARE to take forward in its own way. It may be helpful to think of them in light of “try more and more like this…” In this way, FARE owns its future and takes pathways forward that will serve as a model for others to emulate. You are a part of a international movement –taking concrete steps to truly be a stepping stone to full lives is a worthy goal.
Recommendation #1: Re-Envision Services for Adults
We will start with the biggest, most pressing recommendation we will be offering to FARE. It is also the most difficult recommendation to implement, requiring a significantly different way of working for everyone.
Within the Bangladesh culture, school is for children and teenagers, and adult life, including work roles, are for adults. In order to use this culturally valued ‘natural pathway’, FARE would need to rethink, refocus, and reorganize. We advise that what is now known as Senior High School be reconceptualized as Adult Services.
This would require that the organization build a figurative (and literal) wall between Adult Services, perhaps known as FARE Enterprises, as a separate program from Spectra School. FARE Enterprises forms a discrete program with separate space, a separate vision, separate staff, and separate activities. This means that there is a firmer dividing line between the students/children (under 18) who attend Spectra School, and the adults (over 18) who attend FARE Enterprises.
This is a mindset change, a physical change, and a dramatic refocusing. - many small changes would need to be made, but also some big steps as FARE Enterprises does not have teachers, instead they may have advisors, job coaches, job developers, and direct support staff. Tuition is
not paid for FARE services, but instead a service fee is charged. A change in language, but an important signifier (role communicator) for all.
● FARE Enterprises focuses on meaningful days, community engagement, active, engaged lives, valued role development in all life sphere, and, very importantly, work.
● We advise that Senior B students are reintegrated fully into Spectra School. 12–17-yearolds belong in school, working on knowledge building, getting exposure to all sorts of ideas, learning and growing as students. Spending the day preparing for movement into Senior A group is a trajectory we advise against. These students are moving towards graduation - passing out of school, with a successful launch into adult life.
There are many problematic impacts of grouping such a wide range of people (12 years to 27 years) together under one program head. The young people tend to get “age advanced”, which we noted as children as young as 12 and 13 (Senior B) are spending their days readying to do the same workshop activities such as jewelry-making and paper bag making that awaits them in the room next door (Senior A). Senior B is clearly a mirror image of Senior B, with young teens preparing for the production processes done ibn Senior A by men as old as 27 years. We note that even at the junior age (6-12 years), foundational years for gaining a good education, students were packaging shaving kits in preparation for production activities in the two senior classes. The older participants (18 plus) tend to get age degraded, for example, being 27 years old and still called a student, with teachers guiding your day. These activities will likely not lead to real work, or even the full-rich life which FARE wants for every student.
This “wall” dividing the adult program and the children’s program is important, and equally important is putting a ceiling on the school program. Once a student turns 18, school is over, and students could graduate with a celebration as they move into adulthood. From there, they may apply to transition into the adult program, but they may go elsewhere, into other programs, or work, or just into their adult life.
Recommendation #2: Next – Level Communication Systems
What would life be without communication? In the words of Chandima Rajapatirana, a nonspeaking man with autism from Sri Lanka, “To be without a voice, life is a wasteland. Surrounded by a very loving family and every comfort, it is still a wasteland.” Chandima and other autistic people with fairly significant communication impairments have shown us that being non-verbal or non-speaking does not mean that the person does not think or feel.
COMMUNICATION is an essential need for everyone. It is the gateway to gain access to the good things of life-experiences, relationships, and connections. It gives the person autonomy to express their opinions, thoughts, needs and connect with the ecosystem. We envision a future where students/ everyone has a communication system customized specifically to their unique needs and preferences. This personalized approach ensures that communication methods align closely with
the individual's abilities and desired modes of expression. Whether it's a simple yes/no card system or a more advanced device-based setup, the goal remains the same: to empower individuals to communicate effectively and meaningfully. We were so impressed that a good number of AAC devices are being used, which can be customized according to the needs of the individual - this is an exciting possibility which could use a push forward.
During our conversation with families, communication emerged as a primary concern. Extensive efforts have been made at FARE to expand communication opportunities by providing tablets and AVAZ AAC for the adults in the program.
We offer a few recommendations to deepen efforts at promoting each person to find their voice, in a communication method that works for that person.
1. Go to the next level with AAC:
We noted that the Avaz set-up seemed to be the same for all students, and included very basic greetings, rudimentary communications and FARE schedule, and their use was always teacher directed. We advise beginning to customize AVAZ to include communication about things the person is interested in, or may want to do or say. Including icons which allow a person to communicate something about themselves, or choose between several favorite activities, or even tell a bit about themselves is a great way to start. Start with one or two people, and work on really digging into things that interest and motivate them, and you may see people begin to use them much more functionally. Also remember that if someone is going to use Augmentative and Alternative Communication (AAC), it ought to be available to them at all times. Getting a tab is a great first step, loading Avaz is a great second step, but customizing them is the difference between communication or no communication.
2. Don’t leave out verbal people:
Because FARE serves many/mostly non-verbal people, it is easy to forget the importance of assisting people who speak to further develop speech and use it to converse and communicate. We recommend that FARE increase the opportunities to expose people to conversational speech, to engage in verbal conversation, and to promote people talking. In an environment where few people speak, and the general classroom communication about next activities is communicated almost exclusively by Velcro cards, speech can be seldom heard or used. In fact, our non-Bangla speaking team member had little difficulty understanding what was happening in any classrooms because so little verbal conversation was occurring.
3. Expand individualized communications methods:
We can imagine an array of possibilities. Some students may prefer a simple card system to carry in their pocket, others might make great use of a communication board, others might carry a creative communication notebook with them, which includes some information about the person so that others can relate to the person and start conversation. By tailoring these methods to the individual's preferences and interests, we respect their unique identity and promote a sense of ownership over their communication. Whatever method is chosen, it should incorporate image enhancing age-appropriate and personalized visual elements, such as photographs, pictures, icons, and symbols, into the communication system.
We propose that the personal communication book or device be always readily accessible to the individual, becoming an integral part of their daily routine and identity. Furthermore, if a student already utilizes an AAC app at FARE, we encourage extending its use to home. This approach not only facilitates continuity in communication practices but also allows both the individual and families to experience firsthand the benefits of utilizing a communication system in different settings.
Recommendation #3: A Forward Trajectory
A trajectory is a long-term pattern that emerges as an individual makes different transitions in life; e.g. moving from middle school to high school, from being a student to an employee; from a junior employee to an executive. Moving upward and forward is a positive trajectory. These transitions are important transitions in all human lives which need to be marked and made note of. Each transition describes what we learnt and experienced in the time frame and what to expect in future, what new skills to learn, what else to know about and what to look forward to. Having a clear demarcation in these transitions make the directions of the path clearer and helps us to move towards a goal. E.g. Having a yearly marking of achievements or passing to the next class may project a forward trajectory of the student’s life to their parents- what progress the student has made, the new things that he has learnt and what to expect for the next year. This transition needs to be celebrated; so that we acknowledge the achievements and the knowledge acquired by the student. For the students, we may plan to have annual reports, having graduation parties when moving from one program to the other, or having a parent teacher meeting to discuss the achievements, having one-page profiles for the students and so on.
Finishing student life and entering into adult life is a big transition for any individual. This needs to be marked significantly. As we have noted in the first recommendation, a wall between ‘school’ and ‘work life’ is both typical and important for developmental growth. Mindsets completely change in work life- and it is said to be the biggest transition in life and it needs to be separated from their ‘school life’. Life changes in many ways- the social demands change, self-navigation is introduced, working hours, responsibility, expectations - almost everything changes. The ‘workspace’ also changes. But with every change, we are introducing a healthy stretch which brings in new possibilities. And having this literal ‘wall’ is definitely a possibility that FARE may implement in their new building. The groundwork can be laid for this now.
While planning the directions forward for the adults, a person-centered approach would be more appropriate than an IEP. Using the ‘NorthStar’ tool can be a way forward. North Star is a graphic visualization of a future full life for someone. We often place this “north star” on the cover of a person’s file, as a general direction-setter reminding us what a full life the person is headed for. This is not the goal, but rather an orientation and direction setter. Goals can then to be drawn from the north star and can focus on valued roles. With a person-centered vision of a few valued roles to try out, assist each person to try out that role – one person at a time. Each role is accompanied by both image and competency aspects. Building the role carefully, slowly, keeping in mind image enhancement and competency enhancement. Thinking of a valued role that brings the good things in life and other secondary roles as well- pursuing these become the annual goals for the person. And once identified, follow CVA- follow how it is done in typical people’s lives, then adapt. To mark annual progress, consider creating an Annual Portfolio to show accomplishments, It is more age-appropriate and typical for the adults than data from an IEP. It is a thinking practice that needs to be experienced repeatedly to become an integrated practice for FARE. Tools like MAPS, OnePage Profiles might be thought of as the tools to know the person and explore the trajectory. PATH can be an exceptional way of bringing out the ‘NorthStar’ in people’s lives. Having goals and directions which are highly individualized and based on the person’s interests are far more effective than having numerous goals which are not individualized; these can make life stagnate. KII will be happy to share the tools and train FARE to use these so the people they are working with have a life which moves forward.
Recommendation #4: Harness the CVA Even More
It is very evident that with the strong SRV mindsets and under the mentorship of Dr. Fahmida and Rezwana, FARE has implemented many SRV ideas, keeping the CVA in mind. Every program at FARE has a CVA which can be followed, i.e. basing the program activities on what is done in typical life. There is a CVA for everything- e.g. a kindergarten, a junior school, a Table Tennis game, working out at a gym, doing yoga, how a meaningful day for non-working adults unfolds , a senior classroom, work, etc. The list is endless.
We can easily see that FARE has used the culturally valued analogue in many ways, especially in their efforts to separate children’s spaces (OT) from adult spaces (Gym), excluding adults from “assembly” and in naming various classrooms and computer room. We believe that the CVA can be harnessed to provide even more guidance as Fare looks to cross the river into included lives for the students and adults they serve. In fact, the CVA can help push a fuller transition from Senior Class A into fully adult services.
As FARE knows full well, using the CVA in the program activities has a huge benefit. It serves as an anchor and a reference point to provide guidance to the person and to their supporters for when they are considering a particular service or role for someone; and if we are not sure about where to start, a great place to start is to ask ourselves this question, “what happens for typical people?”
And those same things are what we want to consider for people with disability, of course individually adapted and accommodated.
And to do this, we need to ‘study the ordinary’. We need to observe how a task is being done by a typical person. For doing this, we have to explore the person’s goals and interests first, but we also have to generate ideas and observe how those interests and goals are pursued by typical people. We need to think about the typical place to pursue it, the typical ways that people follow. For example, when designing a junior classroom, FARE staff could visit a typical school’s Grade III/ IV classrooms, with intention to look at their curriculum, the holidays they follow, the way students are being taught, how the classroom looks. This could provide rich guidance in understanding changes that are needed. A typical junior class classroom may include a lot of visuals on the wall, but also might be on the curriculum that they are following, the charts of scientific experiments, geographical charts and so on. Visuals to explain the schedule are very important for children with autism; if some are stored in personal folders; then there is more space for educational information on the wall. Of course, decreasi8ng the “busyness” of the wall décor may be a consideration as well, as
Developing a CVA for the people who are not working at present might give us an idea of how a day at FARE might look like for the adults whom FARE is serving. There are many people who are not working but living a meaningful life- taking language lessons, going out with friends, volunteering, taking internships, learning to play instruments or taking photography lessons, joining sports clubs, becoming fan club members and so on. E.g. Asif is interested in playing Badminton. So, helping him to join a local Badminton sports club, extend friendships there, try going for badminton matches, buying badminton shoes and caps and so on. Then might be joining a badminton-players club/association and reaching out to other adults in the community who share the same interests as him.
For the adults attending gym class at FARE, we can also harness the CVA for athletes and gym members. Buying the typical kind of sportswear, wearing that while working out, having a typical exercise routine which builds up over time, showering and changing after a workout, having a personal trainer, joining a gym outside FARE - these important role communicators may create an opportunity to build new connections with other gym-members as well.
Recommendation # 5: A Balanced School Curriculum - Study and Adopt Elements of the General Education Curriculum
Balancing is important in different life areas so that it stays upright, steady, has equalness and stability. It is recommended that FARE brings in more balance to their school curriculum. We recommend that FARE ‘ups’ the normative rich school based experiences and try to “backstage”, or tone down, the specialized instructions wherever possible. The aim is to get a balanced school
curriculum with focus both on the typical and on the specialized teaching in the right equal amount. The Culturally Valued Analogue is a powerful tool to design the curriculum at FARE. Simply put, CVA means “Studying the Ordinary” and “Using the Natural Pathways” and “Anchoring in the Typical”. While studying this, we recommend that FARE reminds itself of the ‘age appropriateness’ and ‘culture appropriateness’ of all measures they take.
Study the School Education Classification: FARE can twin with a general school to get an idea of the general education at different age groups. By studying the ordinary, they will get a sense of the physical layout of the school, the subjects taught and how they are taught, the teaching materials, and the built-in structure. In even more normative groupings, the ‘Spectra School’ can be envisioned and recreated as:
2y-5y- Elementary Group (This could be an inclusive playschool and kindergarten)
6y-10y- Junior Group
11y-14y- Middle Group
15y-17y- Senior Group
The Adult Services, as mentioned, can be thought of as FARE Enterprises.
The group’s educational curriculum and activities need to be guided by the age-appropriate curriculum and should be culturally valued and relevant. Even for difficult topics, the mindset of ‘they can do’ needs to be established in the classrooms. Presuming Competence will help the student be at their best. Starting Prevocational training with 10-year-olds is not advisable, as immersion in the sorts of experiences that typical children have in school will
Study and modify General Curriculum: Teachers can find out the natural pathways to do the typical. They can observe a typical classroom, see the content that is being taught to that age group of students and then modify the same material to teach the same age group students at FARE. Subjects like Math, Geography, history, science can be incorporated in the special education curriculum after modification. This will help students get an idea and get exposed to these subjects and enhance their learning, understanding and competency.
For example: For class 4 curriculum, they learn the Digestive System – what are the organs that are important for digesting foods. The same can be taught at the Junior section (10 years). It can be modified with lots of visuals of the digestive system, knowing the organs and seeing how they function in the computer class during You tube time; so linking different modes of teaching help the student master the idea.
Study the Co-Curricular: Being at the typical school gives FARE teachers a sense of the different games and co-curricular activities and the themes around them. Special day celebrations like Earth Day, Friendship Day, Teacher’s Day, Music Day, Talent Hunt, etc. and activities around them can be the starting point. For example, for Earth Day, they are informed about the importance of Earth, trees, not wasting resources and recycling. This is followed by recycling waste materials to make
something productive out of it. The parents will be informed about it and at the end of the day students can go back home and show their work with pride.
Teachers will get ideas about the homework given, different projects, field visits at different age groups, and co-curricular activities outside of the school. These all need to be carefully planned and modified for the students. Parents can be involved in the process, which gives them an idea of their child’s education and improvement. The field trips can be either educational or recreational in small groups. The educational ones can be extensions of the curriculum they are studying to give them the exposure of experiential learning. Including these co-curricular activities in their life helps them be anchored to the typical.
Study the Class year flow and Transition: Teachers visiting the general classrooms will get an idea about the different events at school like the frequency of Parent Teacher Meetings, report cards and transition process from one class to next. All these can be modified at FARE and implemented accordingly. Formal Graduation ceremony and Parents given Annual Accomplishment Reports can be used for transition from one class to another which celebrates the accomplishment.
Make Learning Fun, Interesting, Meaningful: The granular skill building, and the Big Picture needs to be linked and go together. The students are learning the skills at a 1:1 level, and these skills need to be upgraded and experimented at different levels to enhance the understanding, generalization and effectiveness of that learning so that the Big Picture can be seen. For example, teachers are doing a fine job at the elementary level with building the academic skills. We see young students as young as 4 or 5 years reading. The same can be seen in the Junior section in the 1:1 sessions. All these skills can be taken up further to the next level. Reading skills can be translated in small group activities in fun games of reading like Read and Do, or Treasure Hunt games. Pairing students in different groups reduces the waiting time of other students. Fun storytelling activities can be done with a mix of objects and pictures and later upgraded with questions. All this experiential learning makes reading fun, exciting and improves comprehension exponentially.
Recommendation #6: Develop School-Based Inclusion Support Service
FARE staff have immense knowledge about a variety of excellent tools and strategies which could be used to facilitate inclusion before a child is rejected from playschool, or Frobel School. The elementary staff are crystal clear about their desire to see students enter or re-enter mainstream schools. This rarely happens, though. We propose that FARE develop a new service intended to prevent students from being separated from regular school by offering and marketing in-school retention support to individual students when a school is first struggling to keep a student. Perhaps
this could be linked with the school twinning process which that Ranjana proposed. The services provided could include a direct support practitioner to serve as a well-training support for the student and the teachers, could avoid the “shadow teacher” role, which is often quite stigmatizing and isolating. Other integrated supports could include individual teacher training, itinerant teachers from FARE going into regular classrooms, and integrating specialized needs that could be met by scheduling aids, and structured teaching into the regular class. This would be such a boon to the inclusive education movement, a commitment to FARE’s values, and a new service which would promote inclusion and help schools, teachers and families to avoid the use of segregated services.
We can imagine this consultative program as yet another service separate from Spectra School, but so coherent with it.
Summary of Specific Recommendations
Adult Services:
1. Establish FARE Enterprises
2. Include 3 divisions within FARE Enterprises
a. FARE Supported Employment (vocational discovery, job development, internships and work support)
b. FARE Meaningful Day (Community engagement, citizenship, and valued roles)
c. Entrepreneurial Enterprises (small-scale businesses)
3. Change IEP process to person-centered planning and goal setting.
4. Within the goals, select 3 individual valued roles to work on with each person in the adult services – this will replace the IEP goals. These could be roles such as master jewelry maker, table tennis player, music buff, elder brother, adult daughter, artisan, chef, meal planner, body builder, and many more, dependent on the interests of people. Work with focus on these roles.
5. Learn and use PATH, MAPS One-Page Profiles and North Star Tool
6. Transform language of classroom to workplace and community language (teacher’s and aides to coaches and advisors, and direct support practitioners)
7. Develop Portfolios that show accomplishments and experiences over the course of each year and celebrated at the close of each year.
8. Restrict age to 18 years and over
9. Reintegrate younger persons back into the Spectra School with a fitting educational curriculum.
10. Deepen, personalize, and individualize communication methods, especially tablet-based.
11. As possible, “backstage” some of the many scheduling card aids posted on walls. Not every student requires large boards, not every student needs them hung on the wall, not every activity needs a sequence board (eg for the tiffin/funds activity). If necessary, some of these can be out of plain site except when in use.
12. Increase individualized community integrative efforts for each adult. There is a high staff ratio, and weekly outings related to interest areas could be planned for very small groups of adults (1-3).
13. Work towards the idea that not every person at FARE needs to get the same activities and efforts. Individualization demands this, and in the long run, families will be inspired by the achievements of others.
Spectra School:
14. Create more normative grouping structure: Elementary, Middle, Junior, Senior, or an approximation thereof.
15. Adopt age-appropriate educational program for 12-17 years olds
16. “Twin” with typical schools to study the CVA
17. Bring more and more elements of the CVA into the school program
18. Bring in more elements of typical curriculum, adding history, maths, science, literature, geography as possible. Integrate experiential learning components such as science experiments.
19. Tie in regular annual field trips in small groups that relate to subjects.
20. Reduce waiting time in junior and senior age groups.
FARE Multiplex:
21. Utilize the Conference and Seminar floor as state-of-the-art facility for hire to businesses and organizations.
22. If fitting, offer some employment to Fare Enterprises participants in that Conference Center
23. Establish the living spaces as a small-scale guesthouse for those attending events as in #20, or for visitors to FARE. Charge for this, and, if fitting, employ person(s) from FARE Enterprises as employees (part time or full time) for wages.
24. Launch an inclusive playschool/kindergarten which includes current elementary students.
25. If fitting, offer some employment at the already planned Café to some Fare Enterprises participants for wages.
26. Create the gym (on top floor) to be integrative and offer some limited memberships to local trusted people. Offer as a before-and-after work perk for employees and families, and, if fitting, employ person(s) from Fare Enterprises for wages. Be sure there are showers and lockers as per norms.
27. Consider increasing traffic of Café to local people by locating on ground floor.
Conclusion
It was our great pleasure to spend time at FARE, and we hope this analysis and associated recommendations prove helpful as movement towards the PATH formulated in 2023 continues at
a great pace. We are so encouraged by the big strides that have been taken, and at the commitment of the leaders, teachers, board members, parents, and care staff at FARE.
With Best Regards and at your Service,
Elizabeth Neuville, on behalf of the Keystone Institute India Collaborative Assessment Team
Ranjana Chakraborty, Manisha Bhattacharya, and Shabnam Rahman