Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

In 1979, there were no educational programs for people with significant disabilities in Lima, Peru. Most of them stayed at home, learned little and did even less. For this reason, I founded the Centro Ann Sullivan del Peru (CASP) in the garage of my parents’ home. CASP has grown into an international full-service center that educates students across the lifespan. CASP is now recognized worldwide for its contributions as a research, demonstration, and model education center and serves people with different abilities–related to autism, intellectual disability, and other neurodevelopmental disorders – and their families.

CASP works directly with more than 400 students and their families in Peru, 100 of whom are competitively employed with pay and benefits equal to others in similar positions in the community. More than 60 CASP students attend regular education schools, and more than 150 students receive life skills education or pre-employment training, or both, at the center and in the community. We have helped educate more than 40,000 families and students with different abilities around the world, with five countries adapting our model of education. At CASP, we believe that people with different abilities can become independent, productive, and happy if we work together with the family as a team.

We have always faced challenges as opportunities, and the COVID-19 pandemic is no exception. The 400+ families and students at CASP desperately wanted to continue receiving education, but now needed a new kind of support. Families were facing an undetermined time of quarantine in their homes with their children. This resulted in many needing to leave their jobs and others lost the jobs they had. Immediately, our team at CASP changed our educational model to virtual in order to address this new way of life. It was as an opportunity to do education in a different way and three elements of how we have provided education for 41 years served as advantages:

CASP uses the Functional-Natural Curriculum, an education that emphasizes learning in real community settings and relevant problem-solving. This prepares students for life, and for the adaptability that is frequently necessary in Peru.

CASP educates parents to be the best parent-teachers for their children.

CASP staff used the Zoom platform to provide long-distance education to the remote areas in our country.

As CASP adapted to this new virtual model, it was evident we were facing several challenges. How would our students, families and staff adapt to using technology as a primary mode of education? Would families still attend our classes? With students at home with their parents all the time, what should the new model look like? How would we support our staff and families through the many new and significant challenges the pandemic brought them?

At CASP, a majority of students receive scholarships and the need only increased during this time because of lost jobs and income. Many did not have the digital equipment needed to participate in a virtual model of education. The first challenge was ensuring all families had the needed equipment to access the Zoom platform. A group of CASP friends and supporters worked together to provide what was needed. Equipment from CASP was given to staff and taken to their homes and they supported families to use and access all methods of virtual communication and education. Families supported other families without internet access by calling and putting presentations on speakerphones. No family was left behind.

We were facing several challenges…Would families still attend our classes? What should the new model look like? How would we support our staff and families?

The second challenge was maintaining CASP’s School of Families, training more than 400 families every two weeks and the largest known school of its kind in the world. It was a place where families came together in person to participate in large and small group training. Now provided via Zoom, the trainings have become a celebration of community and many parents enter early to talk to each other. The first 30 minutes includes a general topic presented to all families and then, via breakout rooms, they practice the topic in small groups with their child’s teacher. Skills such as adaptability, teamwork, resolving problems, and especially the importance of students doing chores at home have been emphasized. We created an award called “The Champion of Chores” that celebrates students who do the most chores. One such student is 5 years old, lives with autism, and completes 55 chores in his home. The School of Families has only grown stronger in this format. In 2019, 83% of families attended and often only one parent was able to attend. In 2020, 91% attended and all members of the family attend.

A third challenge is that, almost overnight, parents became the primary teacher to their children for all aspects of their education – academic, social, emotional and behavioral. This required that we adapt to address this new dynamic and provide specialized training to our staff in order to teach virtually and almost solely through the parents. Prior to the pandemic, parents received 171 hours of education annually and now receive 293 hours, 60 of which are 1:1 with a teacher. Staff previously received 48 sessions and 136 hours of training annually and now receive 101 sessions and 255 hours of training. A survey at the end of the first year resulted in 97% of parents satisfied with the new virtual educational model and 61% reporting that challenging behaviors of their children decreased. Parents have asked to increase the amount of training time CASP provides.

One of the biggest concerns, however, was how we would sufficiently support our staff and families. What we learned is that 41 years of using the Functional-Natural Curriculum and the strong community built through years of our School of Families provided the foundation for students, families, and staff to work together and address the many new and significant challenges that the pandemic brought. When parents were sick with COVID-19 at home and students were anxious and scared their mother or father was going to die, we were able to support them over the phone as they cared for their parent. Our staff saw that they were very caring and alert, following necessary care instructions and safety protocols. If a student was sick, we maintained regular and close communication with the family, prayed with them, and often sent needed medication. For the 77% of previously employed students who were furloughed, CASP staff worked with them to understand it was not their fault, but a result of the pandemic. Staff has supported some to start small businesses, such as making masks, until they can return to work.

Our virtual model during the pandemic drew attention within the global disability community, and we have developed an intervention for Spanish-speaking families in New York and other cities aimed at lowering problematic behaviors and caregiver stress during COVID-19 and beyond that can be studied and implemented with more families. This work is funded by the Mindich Child Health and Development Institute at Mount Sinai. The Seaver Autism Center for Research and Treatment is partnering with us on this initiative.

During this crisis, our team of students, families and staff have worked more than ever in solidarity for the benefit of all members of the CASP family. We believe that the pandemic has made the CASP family stronger and given us opportunities to make the students even more independent, productive, and happy. We are thankful to share our experience with IDD populations across the world.

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