Over Thanksgiving this year, family members asked about my recent mission to Peru. What did I do there, what did I gain from the trip, and how does it relate to my work? I had wanted to reflect on these questions for weeks but had put it off. I think I needed to let it soak in.
It's hard to sum up the trip in just a few short words but I have some thoughts…
The government in Peru does very little in the way of providing supports for individuals with special needs. At first I found myself asking about concepts that are foreign to people in Peru: government funding, residential schools, group homes, autism research groups. For the most part these things do not exist there. I realized that I needed to leave behind some of the assumptions and biases that I brought from my experiences back home.
In Peru, there is a tremendous gap between what the government provides to special needs students compared to general education students. Some of the problems that people described to me include a dearth of laws protecting individuals with different abilities, corruption in politics, lack of awareness, lack of media attention, lack of special education programs, lack of funds, and lack of a structured legal system by which to enforce existing rights. These negatives forces have created a maelstrom that helps to explain the awful situation in which parents of special needs children finds themselves. For example, during one school visit, I observed special needs kids in complete squalor in a makeshift “school” in a dirt field surrounded by filth, rats, and infestation. I was told that under no circumstances would the government allow such circumstances to continue for general education students.
Do special needs students have any rights? On paper, they do have some rights. But even in cases where legislation has been enacted, the accompanying regulations have not been passed, so no one has any idea of how that law is supposed to be implemented. The government has not spelled out a process by which parents can enforce those rights when they are being denied. When I mentioned that in the U.S. we have federal legislation that both protects children with special needs and creates a mechanism for enforcement, I was met with a smile that to me communicated a deep sense of longing for more of that in their own country, and a sense of how far off they felt it was.
In some instances, where the government has failed, private schools have stepped in as discussed below.
Role of the family
The importance of the role of the family in the education and development of a child with special needs may seem like an obvious point, but at the Ann Sullivan Center (Centro Ann Sullivan del Peru, or CASP, in Spanish), a private special education school in Lima that educates children with severe developmental impairments, family involvement and collaboration is practiced day in and day out and it permeates everything the school does. The school's mantra says that the school is 30% responsible for a child's education and development, and the child's family is 70% responsible. Parents understand this idea and embrace it.
The kids at CASP only attend school for approximately 4-5 hours per day, 4 days per week. And the school does not provide every therapy under the sun. At first, I was skeptical of such a model. However, I quickly came to appreciate the tremendous impact of the program. Given their limited financial resources, CASP has created a system where learning and development occur around the clock, not merely within the confines of the school walls.
Teaching functional skills
At CASP, children are taught functional skills that they will need for real life based on the school’s Functional/Natural Curriculum. This approach was developed by a U.S. behavioral expert but rejected by U.S. institutions. The idea behind the curriculum is to focus on skills that children will actually use, rather than to teach rigid academic skills that may have no practical value for them later on.
Students at the Ann Sullivan Center are prepared for employment through regular job training exercises, which are supported by CASP as part of CASP’s overall mission to prepare students for gainful employment. I observed kids receiving their job training at a real life restaurant, re-arranging the chairs, setting the tables, handling the silverware, and cleaning the room in preparation for the expected customers. These students, for example, might continue to be trained at the restaurant for another year or two, and then transition to a full-time restaurant job if they have learned the necessary skills. It was interesting for me to see kids who had seemed to struggle with significant functioning difficulties be able to apply themselves in a focused, attentive, careful, diligent way in the work setting.
I wondered if we were doing enough of this in the U.S. . . .
Families maintain a connection to CASP well beyond their children’s turning 18 or 21. CASP is a continuing and constant presence in the individual’s life. Parents understand that they, and not the school, need to be doing the heavy lifting with respect to the education, development, and growth of their children, but also know that CASP is there to continue providing support across all environments including work and home life.
Generalizing skills to the home
A parent applies the training he/she has received at CASP in the home. Examples that a parent shared with me during a home visit included speaking to the child in a way that allows the child to understand the rationale for doing something, maintaining consistency between what the parent does in the home with what the other teachers work on in school, and presenting a situation to the child so that the child must solve the problem by considering what needs to happen next to fix a particular situation (rather than just giving the child a direct instruction).
Parent support system
Parents believe that they are in it together, and they support each other along the way through regular parent support group sessions. They understand that they are part of a community of parents, children, staff members, and specialists who are joining together to ensure that each child is given an opportunity to succeed in the real world, in whatever way feasible for that individual, in order to become a contributing member to society. CASP is as ready to learn from the insights of a child's parents, as the parents are ready to learn from the teachers and staff. I think this validates the parents' concerns, and helps the school learn more about the child to better meet his/her needs.
The corporate side of supportive employment
Children who are considered individuals with disabilities in the U.S. are thought of as “children with different abilities” at CASP. The school devotes itself to identifying each child’s unique skills, abilities, and interests so that the school can cultivate them throughout the child’s attendance at CASP. And when that child is ready to start working, the school matches up the child’s skills, abilities, and interests with a job that fits. Both the individual and the employer receive ongoing support from CASP once that individual begins working. This form of "supportive employment" is a critical feature of the CASP program, and I believe it is also an essential component of preparing individuals with disabilities to become independent, self-sufficient, contributing members of society.
To understand this better, I met with corporate agents from Kentucky Fried Chicken and the Central Bank of Peru, two companies in Peru that employ individuals with disabilities. Both companies are happy to work with CASP because of the support and training that CASP provides. CASP teaches its students how to manage work-related situations and provides job coaches for on-site guidance throughout the day. For the corporations, this has resulted in tangible benefits to hiring people with different abilities.
What are we doing in the U.S. to transition our children with special needs to an employment setting?
After finishing up at CASP in Lima, I traveled to a city called Cusco, which gave me an opportunity to examine Peruvian education in a more rural setting. I also got a closer look at real poverty. While in Cusco, I learned from staff members about the various forces that a school might have to contend with such as parents who don’t want to be involved in their children's education, unhealthy environmental conditions of the schools, and kids being hidden from sight and not exposed to any form of education because of parents who are either uninformed or in denial. The corruption of past presidents whose actions have harmed local citizens, including accusing the teachers’ union of being terrorists and killing individuals who were studying to become teachers, has not helped matters.
Where the government fails, the private sector sometimes steps up to the plate. The same way this became obvious at CASP, it was also observable at Manos Unidas, a private special education school in Cusco for children with severe developmental disabilities. Manos Unidas was started around 2007 in a small house as a result of the terrible special education conditions in Peru, in general, and Cusco, in particular. The government does not provide any funding. Nevertheless, the school, located in a very quiet rural community overlooking the mountains, educates approximately 30-40 students. The classrooms are small. Children receive individualized attention (usually 2 teachers per classroom of 4-6 kids). Teachers use autism-specific methodologies, personalized daily schedules, and specialized communication systems. Approximately 20 students are currently enrolled in inclusion programs with the continued support of the Manos Unidas staff by their sides within the mainstream setting.
Reaching far-flung impoverished communities
On the subject of special education in rural Peru, I met the director of a project whose mission is to bring special education to children in distant rural communities. The organization behind the project deals with various areas of concern for individuals with disabilities of all ages including health, work, family life, and rehabilitation. The idea is to get these kids the additional supports that they need to become independent and productive citizens. She, too, spoke about how difficult it is to get money from the government. It's great that these types of schools and organizations exist, but it’s unfortunate that their work cannot reach more of the population due to their limited resources.
A global issue
These are global issues. CASP, for example, is influencing special education on a global scale through its research projects, its international conferences, and its efforts to spread awareness and to share the CASP model with other countries. Every country, even a world superpower like the U.S., could benefit from learning from Peru. On the one hand, the United States is so incredibly ahead of Peru in terms of civil rights, wealth and resources, government involvement, and availability of information. But still, schools in our country could learn a great deal from a school like CASP. The CASP model was recently adopted in Panama, where it is being implemented as part of a state-sponsored program. Representatives of the Dominican Republic were on site during my visit to learn more about how they could apply the model in their country. The CASP program was recently highlighted by the Chinese media (unfortunately, my comprehension of the news segment was limited since it was in Chinese without subtitles; the only words I could make out were “Ann Sullivan”). CASP has plans to expand to Africa.
This trip was a heady experience for me. Since returning home, my mind has been racing with thoughts and ideas about education and special needs. I hope to have the opportunity to arrange more trips of this kind in the future.