Program Profile

35th Anniversary Edition

Back in Peru, Challenges Remain

Authors

Liliana Mayo is the founder of Centro Ann Sullivan del Peru. She may be reached at lilimayo@annsullivanperu.org

Maria Girón lives in Lima, Peru with her son Sandro. Maria Girón and her son Sandro López worked hard during the pandemic to stay healthy.

Sandro López has worked in competitive employment through CASP for more than 20 years. He is the main breadwinner for his family, and lives with autism.

An elderly man in a light blue shirt stands in his home, one hand gripping a wall for support and the other holding the hand of his adult son. The son is wearing a dark blue shirt, khaki pants, and glasses, and is looking at his father.

Sandro with his father.

Post-pandemic, we are adapting to new challenges. Amid high levels of corruption and violence in Peru, along with high inflation and very heavy rainfall in our area, we are just trying to focus on delivering high-quality services to families of people with disabilities. The rest we cannot control.

In our training classes we are focusing on the soft skills that employers are looking for today, and we’ve had strong interest from several employers in the delivery sector for all types of jobs.

We are detectives of abilities, too. We are constantly asking our students, what is your dream? Then we go out and find real jobs that they can do and that they want to do. We’re now working with more than 50 companies, though many jobs are not back to full time yet since the pandemic.

I’m happy to say that Sandro López was called back to work three days a week, and we are hoping he’ll be back to full-time work soon. He has done an amazing job of helping to take care of his father, who has Alzheimer’s disease. Sandro never loses his patience, encouraging his father to keep moving, to keep going.

Our goal is to make our work sustainable, and we are focusing a lot of effort on our global virtual training for families. We feel the training of the family is so vital, because if the family can work together to help our students succeed in becoming employed, then the parents have the opportunity to earn as well. Families often say to us, “For the first time, we know what to do,” after our trainings. It is teamwork with the families that makes these successes possible.

Opportunities in Crisis: CASP

Excerpted from Impact, 2021

By Liliana Mayo

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?

Would families still attend our classes? What should the new model look like? How would we 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.

A woman in a red vest holds up a fork with one hand while the other holds a silver bowl. A woman and a young girl, both wearing masks, sit at a table with blue bowls.

Luana Flores Céspedes, and her mother, Lucy Céspedes, participate in an online training session for families during the pandemic with Mirtha Paredes, a specialist with CASP.

An elderly woman in a flowered shirt stands in her home, one arm around her adult son. The son is wearing a striped shirt and glasses, and has his arm around his mother's shoulders.

Maria and Sandro López in their home in Peru.

Back in Peru: Sandro

By Sandro López

I finally returned to my job, which I need so badly in order to take care of my parents, after being on leave without pay during the pandemic. My work week is only three days a week, however, and I earn $273 per month. It consists of filing, posting billboard announcements, shredding, and scanning documents, and other office tasks.

I’m happy to be back at work to help at home with buying food, medicines, utilities, and other things. I am doing something significant: helping my father, who has depression and Alzheimer’s. I help him in and out of bed, prepare his meals, and do therapeutic exercises with him. When my mom has to go out to work, I stay alone with my father. I feel proud to be able to help, and I love it when my mom tells me that I am her right hand.

Building Resilience Amid Job Loss and Fear

Excerpted from Impact, 2021

By Maria Girón and Sandro López

Sandro : I’ve worked at Alusud Peru [a maker of plastic container lids] for 19 years. I sort correspondence, track documents, scan documents, and replenish copier supplies, among other jobs in the office. Before the pandemic came, I worked weekdays from 8:30 a.m. to 6 p.m. I have very good friends there because I’ve been there for such a long time. It’s been so long that now I’m like a coach to new employees, helping them get used to the place. My former supervisor, Mike, was probably my best friend at work. I still have many friends there, but Mike and I were very close and when he got married and had a child with autism, he told me it was different for him because he had known me.

When I am working, I am happy. I see my friends, and I have money to take care of my home. My job pays about $450 per month, well above the national minimum wage here. I pay the light bill and other utilities for our house, and I bought the groceries for the two of us. I’ve also been renovating our home.

In June of 2020 I was furloughed because of COVID-19, and it is very hard not to see my friends at work and in our neighborhood, to not even really go out much. This situation is very sad. I have friends with the disease and we are praying for them. Fortunately, my mom and I haven’t had it.

I’ve had to take some retirement benefits out early, and my siblings are helping us a little, too.

This year has been hard emotionally for my mom and I’ve had to cheer her up so she doesn’t get depressed. We started exercising in our living room to YouTube videos and she has lost a lot of weight. We were worried because being overweight can make the virus worse, but she’s doing OK now. We are following all the protocols and taking care of ourselves.

Maria : Sandro is a blessing to me and my motivation to stay healthy. Now that my other kids have grown up and left home, Sandro and I have become even closer. Even during the pandemic, he never gets tired or sad, he just always cheers me up. There have been times I’ve been depressed, and he brings me out of that. He knows in his heart that one day he will be back at work and life will be back to normal.

He’s been working since he was 15, and was the one who paid for his sister’s education for a technical career. When he was 8, he started taking the long bus ride to school by himself, even though he was very afraid of all the dogs running loose around our town, because we couldn’t afford to pay for two tickets every day. I think this is part of what made him become so independent.

Both of his siblings said they wanted to help us now because Sandro helped them at key moments when they really needed help.

Sandro : I’m happy that I’ve been able to help my family, but we really need this vaccine to come because we are scared. I want to get out of the house and return to work and have money again. It feels bad that all of this was taken away. I want to get back to renovating my home. That is my dream now.

This article was adapted from a conversation between the family and Liliana Mayo, with translation by Dr. Mayo

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