THE STRUGGLES OF THE UNHEARD:
The State of the Less Fortunate Children with Autism
Anne Guiang and Cassandra Tañedo
" Bigla na lang siyang nagwawala kapag gutom siya, pero wala akong magawa kasi wala kaming pambili ng pagkain."
- Marites Cayetano, mother of two children with autism
Marites Cayetano, a mother of two children with autism: Mark, 14 and Christian John (CJ), 23, who has no work because she devotes all her time in taking care of her children whose only source of income is her husband who is a jeepney driver.
At a first glance everything about Mark seemed so normal, but in about a second when he started doing actions, flipping his hand, walking back and forth, making unrecognizable sound, you’ll know at that moment that something is wrong.
Eating and lying down in bed is the daily routine of Mark and CJ. They have no other means of entertainment and recreation.
Mark and CJ were never formally diagnosed as children with autism. Cayetano had a hard time looking for an affordable therapy center for her sons because it costs a lot to them. And so, her sons never tried to attend therapy sessions and they were not checked by medical specialists, not even once.
Mark Cayetano, 14, has an Autism Spectrum Disorder
She tried to enroll her sons in a Special Education (SPED) school but she cannot afford the tuition fee for her sons. Cayetano enrolled her sons in a free training center run by a religious order dedicated to providing care to the poor and disabled through charity and service. However, her sons only attended classes for months due to lack of money for everyday allowance and fare.
“Sumuko na rin ako kasi araw-araw nagwawala si Mark sa school, tapos wala kaming pamasahe papunta sa school kaya mas mabuting ipambili ko na lang ng pagkain nila,”said Cayetano.
“Libreng edukasyon at libreng therapy ang kailangan ko para sa mga anak ko,” said Cayetano. Cayetano had a hard time looking for free therapy and education for her sons. Mark and CJ were not involved in any socialization activities, thus they have a hard time communicating to other people. People with autism needs a lot of attention, love and care from other people.
" Oras na mawala na ako, gusto ko marunong na sila kung ano ang gagawin nila. Para kung wala na ako may mag-aalaga na sakanila at di na sila mahihirapan kasi marunong na sila."
— Marites Cayetano, a mother of two children with ASD
Free Education
It is stated in the Philippine Constitution, Repuclic Act 7277 or the Magna Carta for Disabled People that the State shall provide full support of an integrated system of special education for the physically and mentally impaired children in all regions of the country and this includes people with autism. Moreover it is also stated that the government shall allocate funds necessary for the effective implementation of the special education program nationwide. It is therefore clear that regardless of one’s physical and mental condition just like any other individual who has the right to go to school, people with ASD are with no difference. However, in the Philippines what is more lacking despite the creation of public schools for special children or what they call the Special Education Program commonly known as SPED is a quality educational supporting these people
Moreover, children are all lump together with children who have other types of intellectual capabilities having only one teacher to handle them. For Marites who tried SPED for only a few months “sumuko nako kase nagwawala kapag nagka-klase, hindi makontrol ng teacher, sa mga ganito kase kailangan one-on-one.” which a private school can only offer who command very high tuition fees that an average family could hardly afford.
Furthermore the SPED program of the government is limited for those only who are manageable assessed by a Developmental Pediatrician. Anna Decorina who shares a common sentiments with Marites and also a mother of two children with Autism John Paul 16, and Joshua 15 said, “Although may ni -rurun sila na libre , yung mga manageable lang daw ang tinatanggap at di kami qualified.”
Still, public schools for persons with disabilities (PWDs) is a first come, first serve basis other than the fact that you must be qualified first. Thus, John Paul and Joshua never tried going to school as much as Decorina wanted to, she can’t afford to enroll them to private school catering children with autism.
Social Skills of Children with Autism
“Activity lang nila -kain tapos higa, walang ibang mapaglilibanagan nasa bahay lang talaga buong araw kase di ko naman sila malabas o kaya ma enroll sa school, wala akong pera, ”Marites said. Because of the lack of activities of children with autism who can’t afford to go to school, do recreational activities outside the house or any means of entertainment for them just like a simple coloring books or toys and etc. this resulted for them being stuck at home; no socialization at all other than the members of their family. As a result they become aloof with people and scared.
Socialization is an integral part of a child’s development, this prepares him to do his roles and participate in the society we live in. This is important to a growing child and this is no different to children with Autism Spectrum Disorder (ASD). Their condition must not spare them from developing social relationship with the people that surrounds them because interaction is of chore importance to create a positive impact to them psychologically and to make them feel a sense of belonging.
Despite all the challenges, Marites remains strong for her sons.
Therapy is a crucial factor
In the Philippines, therapy sessions for people with ASD are very expensive and only few hospitals and doctors offer these therapy. Families who have high income are the ones who afford these therapies.
When asked about what help these families need the most Marites exclaimed that therapy sessions is of utmost importance. She understands the importance of therapies even though her 2 children seldom experienced one.
“Dati pinapasok ko sila sa mga therapy sessions nung kaya ko pa kasi P500 per session. Pero syempre hindi naman all the time may pera kami at kaya ko kasi nagkaroon din kami ng problema financially,” said Anna Decorina, who has two sons with autism.
Therapy sessions work to advance, develop and improve the aptitudes needed by the children with autism. These therapies take into account their overall well being like their physical, social, emotional, sensory and cognitive skills. In the case of an Autism Spectrum Disorder, a therapy attempts to create abilities for handwriting, fine motor skills and everyday routine. This is useful to expel hindrances to learning and help the children become calmer and more focused.
“ Kapag may sakit ako, hindi na pumapasok yung anak ko sa school kasi aalagaan niya mga kapatid niya. Wala siyang choice kaya lagi ko na lang sinasabi sakanya na isa siyang nurse and wala nang iba pang mag-aalaga sa mga kapatid niya kung hindi kami-kami na lang. Hindi naman laging pwede yung anak na mag-alaga sa mga kapatid niya kasi may sarili rin siyang buhay.”
- Anna Decorina, has two sons with ASD
Building a Second Home: Training Center
The Guanella Home of the Servants of Charity
As what mentioned above, education for special children such as people with autism is only limited for people up to 18 years old, after exceeding the age of 18 you’re not allowed to go to school anymore. This is one of the main problems of children with autism in terms of education is facing; the absence of a follow up program after school.
According to Ciony Torralba who is also a mother of a child with autism, Patrick Torralba, 17, and the president of Autism Society Philippines (ASP) Tandang Sora Chapter, “Ang kailangan talaga ay training center for PWDs kase once they stop schooling tengga na sila bahay,” said Torralba.
Leonora Barcebal mother of Janet Barcebal, 24 years old, who was diagnosed with autism at the age of 3 has let her child go to school from 7 until 11 years old and no follow ups after “Noong inenroll ko siya sa school nakapagsilata siya, may verbal skills at nakapagsulat pero nung nagstop na siya nagschool, nawala lahat ng natutunan niya,” Leonora said.
Ciony Torralba added that a continuous development is needed for individual with autism because regression took so fast for them. She believes that these people are trainable. What she envisioned is a training center that will train these children to different tasks after assessed by a developmental pediatrician. Tasks that are divided by different sections like domestic such as ironing and laundry, Entrepreneurship such as bagging and crew and for high functioning children TESDA (Technical Education and Skills Development Authority) can train them for computer tasks. By means of this if well-trained they can be deployed to hotels, fast food restaurants or groceries.
Autism Society Philippines (ASP) is partnered with SM and Unilab who made a contract to employed PWDs such as children with autism in their companies but psychology and developmental pediatrician assessment is first needed before ASP will present you.
Servants of Charity: Unsung Heroes
The Guanella Home and the Housing Project of the Servants of Charity
Today’s economy is rough on families around the country, but there are some who are impacted more than others. Having a child with autism is an emotional, physical, and fiscal feat. Parents of autistic children undoubtedly have additional expenditure. Unfortunately a high number of poor families with an autistic child is present in the country and there are not enough government-funded programs available to assist them. Families with autistic children do have options and assistance, but from privately funded organizations.
Servants of Charity, an Italian based Congregation is a private organization whose main advocacy is to help Persons with Disabilities (PWD). Cayetano, Decorina and Barcebal are among the families who are beneficiaries of the organization.
The organization arrived in the Philippines in 1991 and have two chapter in the country, one in Quezon City and the other one in Legaspi, Albay. It is currently present in 22 countries and its mother chapter is based in Italy. Members of this clerical Congregation, known popularly as 'Guanelliani' (or Guanellians, in English) try to give the PWDs the dignified life. They also offer free therapy, special education, and housing whose family members have PWD and this includes persons with autism.
“We offer all kinds of therapy that is possible,” said Fr. M. Loyola Diraviam the treasurer and one of the administrators of Servants of Charity. According to Fr. Diraviam, all those who stay in their compound are abandoned and they will stay their until their death.
The compound of the Servants of Charity is 2.3 hectares wide, with 50 people in the compound and it comprises of three entities:
1. Guanella Center for daycare programs.
2. Guanella homes for residential programs
There are currently 20 abandoned kids staying there. These kids are addressed by the Department of Social Welfare and Development (DSWD). They will stay there for one month and if they are fit in the Servants of Charity, they will stay there.
3. Seminar
Seminarians who stay inside the compound in to prepare them to become a priest or becoming a brother.
Their housing project chosen families must have at least one children with disability or disorder. At present, there are 16 families living in the housing project. The families of Decorina is living in the housing project while Cayetano and Barcebal enrolled their children in the therapy sessions offered by the charity. However due to insufficient income of the family, Decorina and Barcebal cannot afford the fare going to the therapy center.
Moreover there are also a lot of activities for PWD’s inside the compound like games, seminars, training programs, tutorials and etc offered by the congregation and sometimes by other visiting organizations.
The main funds of the charity come from the Congregation itself. Apart from that they also have local benefactors. There are also foundations helping us them like: “Northphil Foundation”, “Feed the Hungry” and “Time to Time”.
“There are a lot if individual donors for the Servants of Charity. They visit and give us help. That means a lot to us because I am a priest and I have no means. Even if I get a stipend, it’s not for me, it is for the kids. It is only for the kids,” said Fr. Diraviam.
The only help that they get from the government are the approvals for their activities and their projects. But in financial terms there are no support coming from the government.
“Perhaps out of the whole income, only 3% from the government. The approvals are the main things we received from them. Accrediting our programs as one of their programs.is one of the big help from the government,” said Fr. Diraviam.
Maintaining the children’s health in the compound is one of the organization’s main concern and also a problem because medicine for their maintenance is now becoming very expensive. The Congregation is in need of huge amount of money to sustain the needs of the PWD’s living in the compound. Apart from that, the maintenance and the person who volunteers themselves as manpower are very much needed.
Fr. M. Loyola Diraviam, treasurer and administrator of Servants of Charity
“Perhaps out of the whole income, only 3% from the government. The approvals are the main things we received from them. Accrediting our programs as one of their programs.is one of the big help from the government,” said Fr. Diraviam.
The Servants of Charity will still continue its mission to help the poorest of the poor families in the countries. When it comes to creativity for future plans, they think creatively to the science of time. “Time is changing, technological things are arriving. We have to think of projects according to the time,” said Fr, Diraviam.
What the Congregation needs is to maintain the children’s help and that requires medicine. Medicine is now becoming very expensive. They are many Filipino people who are dying right now and also the medicines and food are becoming very expensive right now. The Congregation is need of huge amount of money to sustain the needs of the people in the compound. Apart from that, the maintenance and the person who volunteers themselves as manpowers are very much needed.
“It is not necessarily giving money, but the doctors in the country can just check the kids and also the students can share to the kids what they know. Each and everyone is a big help to us. But the primary need is the medicine and the food.”
- Fr. M. Loyola Diraviam, treasurer and administrator of Servants of Charity
Lack of Government Support
In an article entitled , The State of Autism in the Philippines the author said “ Awareness of Autism has grown yet there is a clear disparity between awareness and action and that if public school education already ranked low in government prioritization, then consider how low is special education in priority.” When all the families we interviewed were asked what government support they are receiving none of them said yes except Leonora who tried queuing in the Congressman’s office to ask assistance for her child Janet. The only assistance she received is a financial support of 500 -1000 Php that you can only avail every 6 months together with strict requirements to be followed, Leanora explained.
Bowi Camu whose family is living in the Servants of Charity and a father of 26 years old with autism, John Launcell Camu added that government is not really doing a nice arrangement for this kind of people unlike other places like countries in Europe who established free schooling or even therapy for these children.
The benefits or help coming from the government are “general” services such as 20% vat exemption and discount on tax, transportation, medical and dental services but there are no specific services solely dedicated for people with autism or family who has a member with autism. Moreover laws enacted by the government are more focus on physically disabled people but none for neurological disorder.
“May nakikita akong school na exclusively for the deaf, exclusively for the blind why not make schools for PWD’s kagaya ng may autism, down syndrome, Attention-deficit/hyperactivity disorder (ADHD),” Bowi Camu said. Parents Group such as Ciony Torralba are now sitting with educators, trying to louden their voice for the development of an inclusive curriculum for the benefit of these children with special condition.
Moreover other than education, the call for therapy or medical assistance is also of great importance for these people but remained unheard by the government. There is no single assistance with regard of this other than NGO’s like ASP and Religious Organization like Servants of Christ. Every therapy session which has to be done at least twice to or even everyday if necessary in a week cost 1000 Php for an hour while a check up in a Developmental Pediatrician which must be regularly monitored every 2 years for mental assessment cost 4,500- 5,000 Php, these numbers are a very huge amount for people who can’t even afford to buy their food.
A 2012 statistics revealed that 10 to 13 percent of the country's school children suffer from a form of physical, mental, emotional or behavioral disability including children with ASD. This statistic is not supported by the 1,176 SPED teachers in 155 special education centers in the public education system -- which only caters three percent of these students.
It is the obligation of the state to provide the special needs of these special children as they are also equally entitled for the same right just like any other normal children, guaranteed by the Constitution.