Final Report
Final Report
Are you submitting a Final Report (Yes/No)?
YES
Organization Name: Keystone Human Services International
Project Title:
Report Coverage Date From 1/1/2020
Report Coverage Date To 12/31/2024
Project Information
Organization Name: Keystone Human Services International
Project Title: Keystone Institute India 2020+
Project Contract Dates (start): 1/1/2020
Project Contract Dates (end): 12/31/2024
Enter RFP# if applicable: N/A
Grant Award Amount (Total amount funded by RIST): $ 4,041,023
Amount of Total Grant Award Received as of Report Submission Date: $ 4,041,023
Report Submission Date: 2/28/2025
Geographic coverage area of project activities: Pan India
Objectives or Outcomes 1-5: Measurements to determine if you have achieved your goal.
What was the final outcome of your Objective or Outcome 1? And to what extent did you meet or did not meet your Objective or Outcome 1? Explain what happened and why.
Objective 1: The National Training Institute provides the foundational understanding and subsequent implementation tools to forward the movement to a more inclusive society in India.
During the 5 years of this grant, KII has brought new ideas and evidence-based practices, shared them effectively, and built a leadership foundation that stretched across the country. Our reach has been both wide and deep, and our work has galvanized the field of developmental disability across the country. This was no accident, as it was a part of the initial vision of this work created by RIST, The Hans Foundation, and Keystone in 2015. We believe that our work together has fully, and nearly completely, met objective #1 with success. Although many challenges were confronted, including a national pandemic and the loss of a senior leader to COVID 19, we pivoted, flexed, and figured out how to work differently in a way that led to many good things for people with disability, their families, and the organizations who serve them.
1. The scope of our educational program, both in our earliest day, to the present, is reflected in the following table:
One must look beyond and within these numbers to see the individual thrusts which powered our work. KII is now well known as a premiere training provider, master trainer/ capacity developer, and organizational coach on inclusive practices. More than 20 leading organizations whose leaders are SRV grads have partnered with us in intensive and ongoing ways for training, capacity building and mentorship as they transition towards inclusive and valued based services. Influential, leading-edge organization such as Ashish Foundation, Arunima, The Hans Foundation, Asha Kiran School, Bangalore, CATCH Bhubaneswar, Diya Foundation, Foundation for Autism Research and Education, and Vidya Sagar are some of these pillar organizations which have enthusiastically taken up the use of the ideas we promote.
A. Social Role Valorization came into its own as a uniquely Indian initiative, and a unifying theory of practice towards better lives for people with disability. The creation of the All-India SRV Alliance brought the national community together, helped organizations and families bridge the gap from an interesting theory to real practice. Its basic tenets were taught to literally thousands of people across the country and across national borders to many thousands of people who heard about it from pillars of the disability community such as Poonam Natrajan and Merry Barua. Of those thousands, hundreds were talent spotted and invited to deepen their knowledge and apply the concepts to this work. The All-India SRV Leadership Alliance was formed as a backbone to the Indian SRV movement towards full and dignified lives. Every 18 months over the course of the grant, new leaders were cultivated through intensive 4-day workshops. To power up the implementation process, as well as deepen leaders, exposure of select SRV grads to the PASSING instrument as a mindset-changing experience introduced the possibility of program evaluation. This was realized through our twice-yearly Collaborative Assessments, to help organizations and services to game up towards inclusion. It should be noted that part of our strategy is to help organizations work together towards a high-level purpose, rather than compete with each other and avoid collaboration, and this has been realized in the participation of SRV grads in so many development activities, the strong bonds between them, and the descriptions they give of what inclusion in this community of practice has meant to them. Truly, AISRV has opened up doorways for them, for the families and people with disabilities they are serving.
B. Our Person-Centered Planning training thread sites nicely on the foundation of SRV and has taught the basics of inclusive planning methods such as Personal Futures Planning, PATH Planning and the Capacity Search. Several hundred people learned basic facilitation of these methods, and we have tried to mentor them, so they have the confidence and know-how to actually proceed. The facilitator development three-day event has been provided within 34 organizations and included well over 250 practitioners across India. The adoption of person-centered planning has been evidenced by the
development of the Family Facilitator Circle in the early days of our project, where ten families formed planning circles and moved the lives of their sons and daughters forward. And in Yash Charitable Trust taking up person centered methods as part of the way they work. Jhalak provides a glimpse into the power of these processes, highlighting the changes in Maaya’s life.
The events above have been paid forward in many tongues - Hindi, Punjabi, Tamil, Bengali, and English, again working with our colleagues across the country to share the ideas widely.
C. Collaborative Evaluation
From the beginning, RIST and Keystone recognized that competition for funding and prestige among disability-serving organizations pits them against each other and prioritizes organizational survival over mission and vision. From the beginning, we’ve worked to ignite the commitment of organizations to a shared vision of inclusion. This has been an important and successful part of our change agentry strategy, where, across India, alliances such as the All-India SRV Alliance have brought people together in deep collaboration, learning from each other. Organizations that are on fire to implement the ideas of SRV are often unsure how to proceed. There is no checklist, workbook, or “howto” manual centered on implementing inclusive practice, and the principles that guide us are sometimes hard to put into place. For this reason, we developed the collaborative evaluation process, of which we held 6 during this project. COVID stood in the way of in-person evaluations for a number of years, but we did use that time to prepare people. These collaborative assessments are only done for requesting organization with deep grounding in the ideas we teach. Evaluation team members are from across the country, with a mix of seasoned evaluators and at least one new one each time to cultivate leadership and build bench strength. They are confidential, with evaluators signing a confidentiality pledge. After spending several days at a service, recommendations are formulated, strengths are identified, and an initial oral report is delivered by team members. This is followed by a confidential written report. This has been both an effective change agentry measure, as well as an excellent leadership development process. An example of one such report is here, redacted for privacy. We always follow up and are fully aware of changes organizations make as a result.
D. Jhalak as Evidence of Change:
Jhalak, our annual publication written by our community of practice, has become a repository of small but powerful changes happening within organizations and the ways in which ideas are being translated into action. They are simply beautiful Glimpses into what is positive and possible, and they give our colleagues across India opportunities to describe these changes and show the beautiful adaptation of ideas into practice in the lives of people. A dual language publication, this helps the word get out to much of India.
Page 4 of 21
Jhalak is a first-of-its-kind compendium of poignant, personal stories of change agentry both small and big, individual or organizational, that demonstrate the applicability of SRV theory to practice. It is available both in the print and virtual form in English and Hindi and seeks to showcase, inspire and encourage the seemingly small but powerful action steps that individuals and/or organizations take to bring the authenticity and impact of SRV-led change in improving lives.
Volume 1
Volume 2
Volume 3
Volume 4
Articles for Final Jhalak (these are in final editing stage for the magazine)
E. Training of Future Special Educators
Our efforts to impact the RCI-approved B Ed (Bachelor Level) and D Ed (Diploma) special educator formation at multiple course sites across India did not have the impact we had hoped for. On the positive side, it gave our up-and-coming trainers an excellent chance to gain experience fast. On the negative side, we found the online training culture had very low expectations for participants, the lack of internet for many participants interfered with both learning and teaching, and, in general, many course participants had literally no prior contact with people with developmental disabilities. This made it hard for them to relate to the concepts and become impassioned about change. We were reminded by this experience that our best strategy is a “leading edge” strategy, and we should focus our efforts there. Ground-level work with masses of people to teach about inclusion and implement change is best guided by others, with our support and help.
F. Strengthening and Introducing Other Powerful Concepts and Ideas:
Within the large training numbers contain many potent sub- initiatives such as introducing customized employment, Discovery vocational profiling, community mapping for inclusion, graphic facilitation, and advocacy and activism are just a few. The first-ever promotion of the role of Direct Support Practitioner lays the groundwork for a new profession in India, one that is essential for social, educational, and vocational inclusion to happen.
G. Advocacy and Influence in Policy and Practice:
Page 5 of 21
Other areas contributing to this objective are the MoUs and agreements we have made with government entities and others. There is no question that we are seen as excellent collaborators across India, and our most fruitful associations and agreements have been with like-minded people and organizations. For example, agreements with the seed projects for customized employment have been extremely effective at supporting the very initial attempts to use CE in India. Our agreement with Herbertpur Christian Hospital for Community Lives (which is actually transacted between RIST, HCH, THF, and the Government of Uttarakhand) has worked nearly seamlessly. Our MoU with Lucknow University had great impact on publications related to SRV, development of a disability studies course there, and a series of excellent events on campus, including an International Conference. However, this 4-year alliance is dependent on one SRV grad willing to push as a department head at Lucknow. With her retirement, will likely come change. Our formal collaboration with several entities within the Government of Uttarakhand state has enabled many important services to be developed, and yet our MoU with the National Trust fizzled out with little interest or follow through by the government actors. This was all good learning for us. Alliances based on mutual respect, a shared vision, and personal commitment of people within organizations are fruitful.
The above is intended to give a sense of the scope and power of the national training institute events and practice to bring about the change in Objective 1. A steady stream of details, impacts, quality measurements, and illustrative examples have been provided in our Triannual reports, and we’ve tried to summarize and encapsulate them here, in answering the question posed, “To what extent did you meet or did not meet your Objective 1?”
What was the final outcome of your Objective or Outcome 2? And to what extent did you meet or did not meet your Objective or Outcome 2? Explain what happened and why.
Objective 2: Communities are more inclusive of people with disabilities through developed infrastructure, learning opportunities, and partnerships led by KII.
Over the past 5 years, we have established a number of strong frameworks that we have put in place carefully, with intentionality and diligence. Each of these frameworks lies deeply intertwined with the National Training Institute, with the goal to increase the
Page 6 of 21
receptiveness of communities towards opening up to people with disabilities and working toward belongingness and welcoming effectively. It is difficult to show causality between the rapidly changing scenario towards people with developmental and psychosocial disability in India, but we can see that our work is resulting in real change. Many of the activities included in this objective create exit pathways from institutional living, a part of the move away from separation, rejection, and warehousing, and towards full lives for people with disabilities, embedded in the community.
A. Community Lives:
Community Lives has set the bar high for small-scale, highly responsive, communitybased living models. We can prove that community living is safe and possible for even people with deeply devalued identities. We can show that community and neighborhoods can be welcoming and inclusive if people with disabilities are properly interpreted by others. The development of huge-scale congregated living settings has become the direction forward for families who can afford it, but along with our colleagues across India, we are showing that segregation almost never better or safer. Although the model of Community Lives is expensive by most residential standards, it serves a number of essential functions. First, it is a place to demonstrate the cultivation of Direct Support Practitioners, and the simple fact that the staff there are world class examples of it. To highlight this, Vinakshi Singh, one of the first employees at Community Lives, won the 2024 International Direct Support Professional of the year award byANCOR, awarded in Santa Fe, New Mexico. Truly, ‘best practice’is a phrase often attached to any practice an organization claims to do, but in this situation, the success of the 8-women team of support workers as pioneers of a new roles is immense. These are typical small-town and village women, some with only a 10th pass education, and yet they were selected and trained so carefully and so well.Another feat of community lives is to demonstrate a clear answer to the question, “Are the Women Better Off” since their deinstitutionalization. Because of our Quality-of-Life Protocol, taken pre- and post-institutionalization, and followed up for 4 years, we can indeed show that their lives have improved in every way we can measure. This includes areas such as independence, life skills, earning power, self-satisfaction with their lives, freedom and choice, and individualization. We have 4 years of hard data to prove it. Of course, it seems obvious that life would be better in community rather than locked in custodial care facilities. However, many people and organization warned us that the community would be hostile, the women would be abused and ridiculed, the women would miss the institution, and the community staff would never stay with them and could not be trusted. What a very different experience they have had. The learnings from Community Lives have been shared in books, papers, presentations across the country, and in visits from those who know that seeing is believing. We also know that believing is seeing, which powered this service model from the very beginning.
B. Supported Living:
Anatural build was to recognize that, for some of the women, the two small houses occupied by the 8 women might be home for life, but others may want to live a more independent life. In response to the astonishing developmental growth of R. and S., we proposed to these women that they might like to share a home together under a Supported Living, semi-independent model. They chose yes, and our shared Supported Living project launched in 2024. We faced real difficulties convincing people that this was reasonable, safe, and in accordance with the decisions and choices of both women. This model again is what seems to be a ‘first ever’for persons with primarily developmental disabilities.
B. Family Reunification:
As we continued to create exit pathways from Uttarakhand’s custodial institutions, Family Reunification under our Unity Uttarakhand program was launched in 1 facility, and now has spread to 5, including a Mental Hospital. The development of a 6-step process for family reunification which goes from trust-building, to tracing families, to conducting home studies, to untying bureaucratic knots, to following up has resulted in slow but steady reunifications of 34 people with a very high retention rate. This is in contrast to past governmental efforts which reunited using threats and police drop offs, and no data on what happened to those people. Our Institutional Mapping Report, an intensive look at each and every institutionalized person at 5 facilities across UK, led us to the conclusion that, if we are to downsize institutions, we must work to prevent it. Beds fill up almost as soon as they are vacated. For this reason, Family Preservation is the next positive forward movement recommended in the Mapping report.
D. Customized Employment (CE):
This universal strategy enables individuals with significant impact of disability to find fitting employment in the community.Around the world, Customized Employment is seen as the only effective way to sustain authentic, unsheltered employment for most people with significant developmental disabilities. We had three main goals in the project in this area.
1. Develop and implement the Certificate Program in Customized Employment with the option of pursuing certification in Discovery from Marc Gold &Associates (MG&A), USA.
2. Provide ongoing supports to organizations and employment specialists.
3. Provide assistance to organizations to start free-standing Customized Employment (CE) initiatives.
As for the certificate program, 27 employment specialists across India were trained in Customized Employment over eight-plus months and 19 of them (so far) have been certified in Marc Gold’s Discovery job profiling technique. 13 job seekers have found employment, and three organizations were supported through seed projects which launched started organizational units dedicated to CE. Even though those projects have
ended, each remains firmly committed to continuing to offer CE as one of their key services to the individuals they support. We are certain that this promising pathway will ignite mindset shifts and pave the way for bringing the good things of life within the reach of individuals who are otherwise sidelined in the employment market. We have served as the national hub for CE know-how. It is a small but potent start.
E.Advocacy andActivism
Our activities in this area were effective and potent. We published textbook chapters, journal articles, and we led presented across the country and internationally, all five years All of these accomplishments are detailed in our tri-annual reports and MEL plan reports.
In 2021, we conducted a deep look at the national scene in self-advocacy by people with lived experience of developmental disabilities, and from this crafted an action plan based on these findings. We piloted and offered several self-advocacy workshops specifically for people with developmental disability to develop their voices and advocacy skills, and had our first experience assisting people with developmental disabilities to co-lead these workshops.
What was the final outcome of your Objective or Outcome 3? And to what extent did you meet or did not meet your Objective or Outcome 3? Explain what happened and why.
The THF Disability Initiative expands its disability focused work, building on established positive practices, through increased engagement with KII.
We worked over the first 2 years on this objective, but at the suggestion and encouragement of RIST, this objective was dropped. This was due to the massive changes at THF sparked by FCRA rule changes, which began early in this project’s five-year span. During this time, we worked hand-in-hand with disability work in training MMU staff with the support of Shabina Bano and also worked very closely over these 5 years with THF Uttarakhand. They supported our shared work in Community Lives, by acting as invested team members, attending leadership meetings, and collaborating on nearly every aspect of program development. We also collaborated over the signing of the very first family reunification MoU, which THF agreed to do.
If you were unable to accomplish all of your objectives or outcomes, did that affect your ability to achieve the overall goal of the project?
We believe our work has effectively met the goal of our project. “Keystone Institute India” (KII), a project of Keystone Human Services International, improves the lives of people with
Page 9 of 21
disabilities across India, creating a more inclusive, just Indian society where all are valued, and all belong.” We have accomplished the objectives materially as well as I the spirit of what we proposed to do together with RIST.
Actions to meet this goal were organized under the above-described three main objectives, eventually narrowed to two. In every way we can measure, the national training Institute has had a profound impact on the disability landscape in India, particularly in the areas of developmental disability and autism, and in other disability-related work. Our work in this area established a foundation of theory/values/aspiration followed by action/implementation, followed by leadership development.
Specify any unanticipated positive and/or negative project developments (e.g., partnerships formed, additional funding support gained).
1. It is well known that both RIST, THF and Keystone have been extremely concerned about the conditions in what might be India’s largest custodial institution for people with disabilities. The conditions of the overcrowded and notorious institution in Delhi, Asha Kiran, were highlighted in Human Rights Watch’s 2014 Expose Treated Worse than Animals, one of the reasons Keystone was initially asked to come to India. We were uncertain if we would be able to directly intervene but have kept our eyes on the facility over many terrible deaths and violence throughout the past years. In 2024, we were invited to form part of an advisory panel by the Chairperson, which did not take shape fully, but got us in the door. We created a poster for the staff in order increase their knowledge of the rights of persons with disability under the law, which were posted on all wards. This partnership led to a two-day training course for the staff, with mixed results, but which gave us the respect of the institutional staff. Finally, we helped create the recommendations to the high court developed as a result of the Reeta Banerjee Public Interest Lawsuit, along with the other members of the advisory panel, after the deaths of many residents in a short period of time in 2024 due to violence and malnourishment.
2. We received the unanticipated support of Sense Foundation in the amount of approximately $25,000 USD, which helped us to launch Family Reunification in 2024 by supporting some of the staff salaries, stretching the joint work of KHSI and RIST.
Discuss how you addressed both anticipated and unanticipated challenges in the course of the project. Is there anything that the foundation could do to assist you with addressing these challenges, and was there anything in the past that the foundation could have done?
The most intense monumental unanticipated challenge was COVID 19, in which we had to quickly pivot away from in person learning events with little to no experience in on-line distance events. We quickly gained that expertise, assisting others across the country as well in seeing the potential in effective online training. As an advantage, we found that the period during COVID was intensely rich for leadership development and bench strength, as our national network had time to invest in our movement.
Within Community Lives, our focus was on supporting the health and safety of both the women and staff, but it was very challenging for many reasons. Partly was because the women were quickly isolated, and integration was limited. On the heels of the recent freedoms they experienced through being deinstitutionalized, this was very difficult for them to bear.
In the chaos of COVID in India over the first few months, one woman HCH serves in Community Lives passed away in hospital, and we lost our director Dr. Narender Sharma to COVID. RIST was extremely supportive and helpful in both of these circumstances and eased the potential problems with the Government of Uttarakhand’s anxiety over women in the community being at high risk for COVID. Also, RIST’s flexibility with understanding the need to flex finances and put some projects on hold until COVID eased was key to our being able to accomplish so much. Another major challenge has been to establish collaborations with the government which are seen as partnerships rather than being seen as charitable benefactors. Being willing to share costs of programs, both through in-kind such as venue space and office space as well as actual hard funds have been successful but still challenging. From the earliest days, RIST invested in getting to know the government actors in Uttarakhand, coming to meetings, and reinforcing partnership rather than benevolence, and that has helped a great deal.
On the national scene, it has been much more challenging. Our natural point of connection has been the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Intellectual Disability, and Multiple Disabilities. However, once The Hans Foundation, who was our entry point, began focusing on self-implementation, we found it difficult to maintain a relationship. Our agreements and MoU with them resulted in lots of effort on our part (organizing and providing training for corporates and initiating a Deepening and Strengthening disaster recovery program in Odisha), and hardly any follow-through on their part. COVID also impacted this, no doubt, as the Odisha program was intended to strengthen disability organizations after two cataclysmic cyclones, and the pandemic brought an understandable new focus.
Future efforts must still focus on government change in order to build a lasting and functional disability-support structure in the country, consistent with the law, in addition to strengthening family and organizational focus, which we have been very successful in.
In your opinion, what is the most remarkable accomplishment or finding of your project?
We are most proud of the simple fact that we can now prove in every way that we can measure that people, no matter their disability, are better off in the community. As well, we can prove that, when people are given the opportunity to leave congregated, segregated settings. experience transformational growth, meet challenges and take up valued roles in their community. Our longitudinal data collection examines important life areas such as level of autonomy and choice, independence level in functional areas, self-perception of their quality of life, and elements of community integration.
Although RIST and Keystone believed this would be true because of our shared values and our knowledge, we can now show it is true in a quantitative way over 4 years, using pre-and post-data collection. Small-scale residential services are still far from the most prevalent residential option for families. In fact, as we noted at the very beginning of our work, largescale, institutional facilities are being built across the country. This has not changed. However. the recognition that even larger facilities can be better if they use our example of well-trained high quality direct support professionals, use of person-centered individualized planning methods, positive support methods, a developmental approach, and Social Role Valorization as a foundational theory of practice yields results. The results are available in living color in Uttarakhand and are impacting and impressing leaders from across the country
Impact (on the organization, community and/or system)
To what extent did the project meet the needs of the target population served by the organization?
Our activities have developed a strong network of passionate, engaged and capable people across the country. Family members and disability-serving organizations have formed the basis of those who have truly had their needs met by our work. In fact, a look at the feedback which has been gathered from events over the past 5 years, the social media posts from organizations and people across the country, the fact that our workshops are often filled beyond capacity within a few days of posting. The enthusiasm is infectious.
Many families and organizations which were already forward-thinking (remember that is our sweet spot) have been propelled by the ideas we espouse. This has directly impacted people with disabilities
What changes in knowledge, attitudes, behavior and skills did you find among beneficiaries, staff, clients, industry/field?
We have been able to quantify the perception of those who attend training events, who overwhelmingly note that the content has changed their perspectives on disability. Our social
media and commentary by our allies in this work speak to self-professed change. The articles submitted to Jhalak speak to shifts and changes in actual implementation of ideas. Skepticism by government about the possibilities for receptive communities where de-institutionalized people have been replaced by encouragement and enthusiasm.
We have watched as families and organizations have actually moved to assist people with disability to take on valued roles including entrepreneur, citizen, beloved mother, voter, artist, valued employee, good neighbor, and so many more. Families have been surprisingly receptive to welcoming institutionalized mothers, sisters, and brothers back home with modest assistance and support. These shifts and changes have been documented throughout our work in our tri-annual reviews, Jhalak articles, publications and impact stories.
Please share performance measures you have collected that demonstrate the impact & report the results of the objectives or outcomes identified in the application.
There have been many performance measures that have been shared, tracked, and studied. Perhaps the most impactful have been the longitudinal data that supports the simple fact that life is better for people in the community. Rarely has pre- and post- de-institutionalization data been clearer. In our outcomes reporting, we can decisively show that person centered methods are being employed, that people have more choice and control, that people have gained skills and independence, have more relationships, and perceive their lives as much better. This relates directly to objective 2: Communities are more inclusive of people with disabilities through developed infrastructure, learning opportunities, and partnerships led by KII.
Another compelling area is the high regard in which learning events are consistently reviewed by participants. Overall and across all events, our metrics show that our events are highly rated in terms of skillful trainers, helpful content, desire to attend future events, and mindset change.
Page 13 of 21
We have watched these indicators over the years to be sure what we are providing is needed, wanted, useful, and well delivered.
Learnings From the Project/Program
List and expand upon top 3 things that made your program a success.
Our team met together recently to have a fulsome discussion bringing together a team perspective and analysis on this question. It was hard for us to narrow it to 3, but we have done so.
1. From Ideas to Action: We have been committed from day one to build something that lasts. This means that ideas cannot only be taught, they must be implemented and put into practice. Our mantra of “no one offs”, established in the beginning days of our work with RIST, means that we are there to guide and support. Training in theory is followed up with implementation support, evaluation, handholding, problem solving, and troubleshooting. Ideas of how to build and structure high quality, responsive services are not just talked about but tried out in our work in Uttarakhand. We not only tell, but we show and do alongsideour many allies andcollaborators. Thisgivesushighcredibility among families, organizations and people with disability. We may not have all the answers, but we work earnestly with our allies to discover ways forwards toward a world that works foreveryone.
2. A Strong Values Base: Our consistent reliance on our vision and values to guide us has helped keep our work focused and on track. We have been mindful and careful about inculcating Keystone's values in staff, which includes recognizing the importance of all
Page 14 of 21
people and treating individuals with respect. This has meant that Keystone staff and partners are highly consistent in our work, committed to a shared vision, and are recognizable by the way we speak and interact. We have tried very hard to create a team of staff and associates across the country to model and share a consistent set of values during trainings and in their work with the community.
3. Engagement of Thinking Leaders from Across India: We have been intentional in cultivating the ideological and practical support of the most respected leaders across India – the pillars of the developmental disability community in the country. THF and the National Trust assisted us in the early days to invite these people into our work, and it has created momentum with has lasted through the early days and has sustained us throughout our tenure. Many of our allies feel we have proven ourselves as committed to our vision, our shared work, and are authentic, high-quality partners in it for the long haul. Our allies have grown in numbers, but associating ourselves with like-minded, forward-thinking people has helped our successful strategy of working on the leading edge.
If you were starting the project again, are there things you would do differently? We would be interested in hearing your thoughts about alternate strategies or program design
It is difficult to imagine a different pathway than the one that has unfolded, but there are several things we would change.
1. We did a lot of “seed sowing” the first few years, and much of it was in-person. This carried a high price tag in effort, wear and tear on staff, and work. Because we have gotten pretty effective at on-line work, we should be cautious about expending inperson efforts unless people have been talent spotted through our introductory events. We learned this lesson but only began to crystallize it in the past year. After COVID, we resumed in person events eagerly, sometimes travelling to areas we had targeted for development. For example, the Tools for Inclusive Practice workshop was conducted in Bhubaneswar, and the local organizers have a hard time getting 25 people there. Although there were strong participants, many were probably not people who will use the ideas systematically. We are not saying it did not benefit them, just that we need to keep our “leading edge” strategy. For our next Tools event, it was by invitation only, drawing from people across the country who we knew were very strong candidates. For the most part, we have been using this strategy with better success and a better use of resources.
2. We also relied upon leadership within THF to push our requirements that the government in Uttarakhand increase their funding of Community Lives over time. THF leaders had a great deal of leverage at the time with the government and were also personally committed to the sustainability of Community Lives. RIST and Keystone were fully aware of the commitment we were making to the women who left the institution but were not able to fully realize that the government would up their
contribution. We feel Community Lives is essential as a learning ground and proving ground for small scale community-based residential as an alternative to highly segregated models, but in hindsight should have been clearer with the government on expectations rather than trust that other leaders would push payment agreements strongly. Because the MoU is not held by Keystone, it was difficult for us to push. We learned this lesson and proceeded with Supporting Living as MoU holders directly with the government.
Learnings Applied
Now that the project has ended, is your organization looking to continue to work on solutions to such issues? If so, how will you move forward?
We believe our 2025 plus proposal builds powerfully on all this work, moves it forward, and addresses some of the areas which need to be bolstered.
In particular, the Direct Support Professional national training curriculum will only have impact if it is actually used in its proper form to train a new sort of profession. This is one of the areas in the project where actual uptake across the broader disability workforce and service community is necessary. In this project, we invented it, tested it, and trained master trainers to teach it. This has been a great success, but the important next step is to roll it out, especially in first languages, and that is our next plan.
Also, we are committed to keeping Customised Employment alive through the next formative years, and this as well as other thrusts are well-continued in our plans for 2025 plus with RIST.
However, all of our work has deeply informed other organizations across the country. The basic introductory ideas on person centered tools for inclusive practice have been taken up by esteemed organizations like Vidya Sagar in Chennai and YASH Charitable Trust in Mumbai as ways in which they work. Organizations led by the legendary Poonam Natrajan and Sushama Nagar cause change to be institutionalized and made common practice. Social Role Valorization has become the foundation for such well-known organizations as Action for Autism and Ashish Foundation in Delhi and Diya Foundation in Bengaluru. Each of these organizations improves the standing of ideas that matter that are now in many ways here to stay in India. Customized Employment has been established within All-Inclusive Foundation in Bengaluru, leading to other organizations ready to try it out.
Please provide a brief summary of publication or plans for publication (if any).
We have published a number of articles and book chapters during the course of our work. Most recently, Betsy Neuville has taken the lead in creating an international version of the PASSING ratings manuals for program evaluation and training use in India. Published articles and chapters are as follows:
Wolfensberger, W., & Thomas, S. (2025). PASSING: A Tool for Analyzing Service Quality According to Social Role Valorization Criteria, 2025 Abridged Version of the (3rd rev. 2007 ed.) PASSING Ratings Manual. Rockland, ON: Valor Press.
Neuville, E., Cardozo, P., De, M., & Lemay, R. (2023). Social Role Valorization Theory in India: An Idea with Consequences. In Understanding Disability: Interdisciplinary Critical Approaches (pp. 25–38). essay, Singapore: Springer Nature
Neuville, E., Mondol, G (2022). Never Too Early, Never Too Late: Working towards Inclusive Lives for People with Disability. Bright New World Consultation Proceedings. International Center for Promotion of Enterprises (ICPE): Ljubljana
Narasimhan, L., Mehta, SM., Ram, K., Gangadhar, BN., Thirthalli, J., Thanapal, S., Desai, N., Gajendragad, J., Yannawar, P., Goswami, M., Sharma, C., Ray, R., Talapatra, S., Chauhan, A., Bhatt, D., Neuville, E., Kumar, KVK., Parasuraman, S., Gopikumar, V. and NILMH Collaborators Group (2019). National Strategy for Inclusive and Community Based Living for Persons with Mental Health Issues. The Hans Foundation: New Delhi
Neuville, E., Sharma, N., & Raj, L. (2020). What’s on the Other Side? The Impact of COVID 19 on Organizations Serving People with Disability across India. Asia-Pacific J. Mgmt. Tech. Volume 1(2) 01- 07 https://doi.org/10.46977/apjmt.2020v01i02.001
Neuville, E. (2019). Pathways to the Mainstream: The Promise of Social Role Valorization. In S. Dutta & M. De (Eds.), Understanding Autism (pp.32-46). Kolkata, West Bengal: The Asiatic Society.
Neuville, E. (2018) India Should Avoid the Mistakes of the West. Times of India, 3/01/18 https://blogs.timesofindia.indiatimes.com/talkingturkey/theres-growing-demand-forinstitutional-facilities-for-people-with-disabilities-india-should-avoid-mistakes-of-west/
Neuville, E. (2017) What Really Matters? The Autism Network Journal, 12(2), 2-5.
In House Publications Include:
Customized Employment Summary Report
Institutional Mapping Report
Community Lives Program Design
Supported Living Program Design
Personal Life Outcomes Protocol- Adapted for the Indian Context
Community Lives Outcome Report
All India SRV Leadership Alliance Membership
AISRV Evaluation and Reference Manualhttps://issuu.com/keystoneinstituteindia/docs/srv_evaluators_ratings_reference _manual
Sharing of the Work
Do you have any stories that capture the impact of this project?
We include three of many stories of impact. This first one is the most powerful reunification we have has the honor of being involved with and facilitating. Ms. Nur Jahan and her son Nury Alam have given their full permission for the use of their photos and name.
Page 18 of 21
You must ensure that all rights, consents, licenses and permissions have been obtained prior to submitting images. For images provided to the Foundation please include captions, names of any people pictured, and any acknowledgements required. The provision of information and images will be taken as permission to reproduce and publish.
Any additional information?