AAAP’s flagship project, “A Special Place”, takes center stage in this GMA special report; but it also features some of the amazing families that comprise our membership: the passionate Erick Villacorte and Ulan, the energetic Cathy Cham and Vico, and our formidable President, Lirio Covey and Mikey.
A dream village for Filipino adults with autism
Camela G. Lapeña, GMA News November 10, 2011 2:17pm
We won’t be around forever. This reality is something most people take for granted, but for parents whose children are diagnosed with autism, it’s especially worrisome.
“As I grow older and became more aware of my mortality, it gives you a sense that life changes, your vulnerability… I started thinking, I’m getting older, the time will come when I will need care. I won’t be able to take care of my child with autism,” says Lirio Covey, whose son Mikey was diagnosed with a “brain disorder” when he was three years old. It was 1982, and little was known about Mikey’s condition then.
Today, people are more aware about autism, a group of developmental disorders that are manifested in difficulty with verbal and non-verbal communication, social interaction, and repetitive behavior. Symptoms of individuals with autism vary from mild to serious, and while some individuals are able to function independently, majority require assistance throughout their lives.
One problem that confronts families is that there are not many options for those who are diagnosed with the condition.
Erick Villacorte, whose daughter Ulan has autism, shares that early child intervention programs or individualized education programs are usually used to address the child’s learning needs.
But he observes that there is a bias toward eventual educational integration, and social mainstreaming tends to be the ultimate goal. This leaves very little room for alternatives, in case the child is unable to find his or her place in conventional society.
“I often wondered whether the devastation we parents experience on first hearing the clinician’s diagnosis is more the crushing blow to our own aspirations for our child than fear for their future welfare,” says Villacorte.
Adults with autism
Twenty-year-old Vico Cham is known as “Mr. Proudly Autistic.” After improving his speech, motor skills, and self-help activities as a young boy at the Learning Partners School, Vico enrolled at Shine Special Education Center, where he developed his artistic talent. Now, he holds exhibits during the National Autism Week in January, showcasing his artwork in computer graphic painting and human figure sketches. Vico is taking a computer graphics course, and pre-vocational restaurant services training.
His family is hoping he can work at a coffee shop or restaurant, since Vico is what is known as a high-functioning autistic adult. But they are also aware that the time will come when they can no longer take care of him.
The question of what happens to people with autism when their parents and other care givers are no longer around seems so basic, one wonders why it hasn’t been asked before. But it actually has been asked, probably too many times to count, by anyone who has ever had to live with autism. When Covey realized there were so many parents out there who could relate to her experience, she began to form a group.
“That’s really the key question which resonated with all the parents. Who will take care of my child when I get old?” says Covey, who received several responses when her essay “Living with Autism” was published in The Sunday Inquirer magazine.
“We want to be involved in whatever you do. We have been thinking of something like this for a long time,” Covey recalls the content of the letters she received from parents.
Now registered as the Association for Adults with Autism, Philippines (AAAP), the group is working on its first project called A Special Place. The goal is to build a safe and secure residence and natural environment for adults with autism. This will enable them to live independently from their families, among their peers, and grow to live wholesome, productive and happy lives.
A family home
A Special Place will be modeled after one of the existing setups in New York, called a farmstead model. “They really mimic the atmosphere of a family home,” says Covey. All the homes will be located together in one area, and there will be houseparents. Within the community there is a work facility where they can do weaving, or grow vegetables. There’s also a building for recreation and entertainment – a library, a theater, and even an indoor basketball court.
The other model for a residence has individual, stand-alone homes. The residents are all under a single organization that manages the different homes, but they go out to workshops during the day. Covey notes that this would be difficult to have in Manila, where heavy traffic would make such a setup difficult.
“It’s a matter of practicality and culture. With regard to culture I thought of the farmstead model where there is a greater possibility of the parents being more involved,” she says. As the child grows, taking care of them also changes.
“As he becomes an adult you realize he’s a different person. It’s different raising a child with autism, his needs are different. It’s very beneficial for them as well as for us to be in a place where they are with peers,” says Covey of her son Mikey, who lives in a residential place in New York.
Covey says that although they are quite pleased with their setup in New York, she prefers to get older in the Philippines. “Each visit we made here made me realize there are many who need it here and there are no facilities,” she says.
Vico’s mother Cathy Cham learned about AAAP and A Special Place when her eldest son Carlos did his thesis on the group home for independent living of adults with autism. Former Autism Society of the Philippines President Erlinda Koh introduced Covey to them, and she became a consultant for the thesis.
An architect and project manager, Cham will help develop A Special Place, from finding the right site to designing and implementing the dream village. “We have started identifying the site, while the thesis of Carlos will definitely help for the building designs,” says Cham, whose son Carlos is also an Architecture graduate. A Special Place will be a future home for Vico, where he can also work and serve other fellow persons with autism.
“I would encourage fellow parents of adults with autism, specially those with Low- and mid-functioning level to consider this village to help further development for their children. There are just a number of special schools for Adults with Autism, the village will offer programs for independent living and pre-vocational activities which will allow them to further grow and function,” says Cham.
Covey says that A Special Place will be able to accommodate around 18 residents. The campus will initially have three homes, with six residents in each home. Accommodation will be on a first come, first served basis, but residents must be clearly diagnosed with autism.
“We will service not the high-functioning, because we wouldn’t be that helpful to them, neither the profoundly handicapped because they would need more care than we can give,” says Covey. It could cost around 40,000 pesos a month for a resident, but they don’t want it to be exclusive. “We want it in such a way that some families who can afford will pay, and those who can’t will have sponsorship,” says Covey.
Villacorte had already begun working toward a similar residence in San Mateo, Rizal when his sister-in-law came across Covey’s essay. Although Villacorte does not foresee Ulan becoming a resident of A Special Place, he is an active member of AAAP and is tasked to take the lead in increasing its membership base.
“I feel that there are valuable lessons in community building to be learned by taking an active part in this project of the AAAP. I hope these lessons will serve me well not only in my own efforts to build my daughter’s home community, but also in the event that I get the chance to help other parents build similar communities for their children in other parts of the country,” he says.
AAAP is currently working on finding a place and raising the funds to build their dream village.
“The most important thing that a parent can wish for their child is a happy life, but there seems to be a tendency to thoughtlessly project our mainstream standards – a good education, a career, starting a family, etc – as the requisites to happiness and fulfillment,” says Villacorte.
With A Special Place, persons with autism and their families may have a suitable alternative on their hands to the often unrealistic goal of social mainstreaming.