Dilemmas on the ‘Different’

Are you still ‘special’ if you’re poor?

Last of three parts

MARAGONDON, Cavite –  In theory, Jaime ‘Jay’ Divina Jr. should have been able to go to school, despite the poverty of his family and his own physical shortcomings. After all, education up to the secondary level is supposed to be free in this country, and there are laws to ensure that even children with special needs like him are not deprived of learning opportunities.

Diana & Jay.

MOTHER AND SON. Diana once thought of giving Jay away but soon changed her mind. She decided to take responsibility for him and vowed that they will stay together, wherever fate takes them. Photo by Karol Anne M. Ilagan.

Yet at 16, Jay, the eldest in a brood of four, has yet to step inside a classroom. In fact, in 2009 his 13-year-old sister Jaciel was the only one among his siblings who remained in school. The other two – Jonathan, 15, and Carlinnette, 10 – had to stop because their mother Diana could no longer afford expenses such as the children’s day-to-day baon, school supplies, and other requirements that do not go free in public schools. In 2010, Jonathan and Carlinnette have resumed schooling, but are at least two grade levels behind their age groups.

Diana chose to have Jay skip school altogether partly because of the family’s nearly absent funds. “He should already be a senior in high school,” says the single mother who makes about P50 on a good day selling scrap metal and bottles she picks from dumps. “Pero ‘di naman namin talaga kaya (But we really just can’t afford it).”

The bigger hindrance, though, is Jay’s condition. Says Diana: “All the things a child would already know how to do, he doesn’t know. I still have to feed him, bathe him, and brush his teeth.”

She says Jay was born with a hole in his heart, which she believes has led to several other complications. Jay was already five years old when he began to walk and up to now has very weak limbs. Frail and puny for his age, he has also been partially blind since birth and is plagued by frequent seizures that send his mother into a panic every time.

Under the law, Jay’s physical disabilities entitle him to special education (SPED) that would help him develop to his full potential. The Department of Education (DepEd) categorizes children with special needs in 11 types of disability: learning disability, hearing impairment, visual impairment, mental retardation, behavioral problem, orthopedically handicapped/health problems, children with autism, speech defect, chronically ill, children with cerebral palsy, and children with multiple disorders. The mentally gifted or fast learners are also considered as children with special needs.

The crudely built shack that Jay’s family calls home is only walking distance to the munisipyo, which in most cases would imply that aid is within reach of the boy. Yet Jay is one “special child” who somehow fell through bureaucratic cracks, rendering him unable to access the help due him.

SAFE HAVEN. Diana and Jay in the shack they call home. Photo by Karol Anne M. Ilagan.

SAFE HAVEN. Diana and Jay in the shack they call home. Photo by Karol Anne M. Ilagan.

Unfortunately, his situation isn’t that rare. In 2005, the Department of Education (DepEd) counted 5.5 million children as having special needs nationwide, representing some 13 percent of the country’s children and youth. Of these children, though, only around 4.8 percent or about 264,000 were being provided with appropriate educational services.

In school year 2007-2008, DepEd recorded a total of 186,764 children with special needs enrolled in both public and private elementary schools. But it could not say how many children entitled to special education had been left unserved for that period, since it had yet to update its countrywide tally of such kids.

THE 1987 Philippine Constitution has provisions on special education, while Republic Act No. 7277 or the Magna Carta for Disabled Persons introduced some rules on SPED.

The Philippine government is also a signatory to the 1994 Salamanca Statement on Principles, Policy and Practice in Special Needs Education, which means it recognizes the need for policy shifts to promote inclusive education that ensures each and every child has access to learning programs appropriate to his or her needs.

SPED’s ultimate goal is the integration of learners with special needs into the regular school system and eventually in the community. First, however, a child’s special needs must be recognized – something that can be difficult to pull off in an impoverished setting.

Dr. Edilberto Dizon, one of the SPED pioneers in the Philippines, notes, “A diagnostician or a clinician will have to identify or diagnose the child. You cannot just go to a municipal or provincial doctor to be able to tell if the child is special. They may know the child is special but not really specify what the exceptionality is.”

DIVINAS. Diana (second from left) with children Jonathan, Jay and Carlinnette. Photo by Karol Anne M. Ilagan.

DIVINAS. Diana (second from left) with children Jonathan, Jay and Carlinnette. Photo by Karol Anne M. Ilagan.

“Definitely, not all physicians are trained or have the clinical eye for exceptionality,” he adds. “It takes a person specializing in such to be able to know. And that will cost money.”

For sure, Dizon is referring to those who are either mentally gifted or disabled and not really to the likes of Jay, whose physical disabilities are obvious enough to anyone, especially among his neighbors. Says Diana, in dismay: “It’s the little children who tease him mostly because they do not understand him. They call him (Jay) all sorts of names: blind, cross-eyed, crippled, lame.”

She says that Jay tries to do things by himself, although accomplishing even simple tasks could have disastrous results. For instance, whenever Jay eats, the food often ends up all over the place. “Instead of a plate, he uses a bowl,” says Diana. “Otherwise, the food will spill out. He tries to eat properly, though, because other children tease him.”

Diana says she knows that “if you ask for it,” there is some sort of assistance they could get from the government for Jay. But she says that “they also ask for so many papers,” and that she doesn’t know where and how to begin seeking help.

Even for well-off families, the task of bringing up a special child is formidable, says Dizon. “When you raise a special child,” he says, “ideally, you want the best intervention platform. That will mean P1 million a year would not be enough – for therapists, professional fees, home therapy, shadow teacher, and instructional schemes.”

The next hurdle is the child’s training. Dizon, who is a University of the Philippines education professor, hints that this can be almost insurmountable for poor families.  “(T)hey (parents) want to teach their child but they will not even know how,” he says. “Because you would have to get training, and training would cost money.”

Then comes the grown-up child’s transition into the community. Dizon describes the most probable scenario involving an impoverished family: “If the child is high functioning, then maybe he could help in the fields. (But) generally, he will just stay at home.”

SIBLINGS. Jay with youngest sister Carlinnette, a 10 year-old Grade 2 pupil. Photo by Karol Anne M. Ilagan.

SIBLINGS. Jay with youngest sister Carlinnette, a 10 year-old Grade 2 pupil. Photo by Karol Anne M. Ilagan.

“WE’RE LOOKING at all means to find a child (with special needs),” says DepEd Special Education Division chief Mirla Olores. “Sometimes, there’s a tendency for parents to keep their child away from society. That’s why we work with health workers because they would know which parent gave birth to a child with special needs. Early intervention is good for the child.”

She says a cash-strapped family may seek help from the municipal council through the Special Education Fund. Created through Republic Act No. 5447, this fund is derived from the proceeds of an additional tax on real property and from a certain portion of the taxes on Virginia-type cigarettes and duties on imported leaf tobacco.

Olores adds that a disabled child like Jay is entitled to benefits such as discounts in groceries, medicine, and transportation through Republic Act No. 9442, which complements the Magna Carta for Disabled Persons.

Jay, says Olores, falls under the category of children with multiple disorders. She says he would be perfect for DepEd’s home-based or distance learning programs, which are designed for children who cannot go to school physically – that is, they live in far-flung areas, they cannot walk, or whose parents cannot bring them to school.

Olores says these programs are especially for poor families who cannot provide for the child’s transportation. “If the parent cannot bring his child to school, we will go to them,” she says.

In distance learning, a teacher would go to the child’s house at least once a week (either Friday or Saturday), and teach the parent or anyone old enough in the household how to train the child. The lesson plan is modified according to the child’s specific needs.

Another alternative is for a special child to avail of a community-based learning program that either teaches children how to read or write or helps adults learn work skills so that they may be independent and productive. There are also hospital-bound programs, which are meant for children who are chronically ill.

For more ambulatory children with special needs, there are either SPED centers or classes to consider. Again, that’s in theory; in reality, it’s not as if they can just walk into one, much less find one that is more or less a match for them. Olores also admits that some parents are still not aware of the programs and services available for them and their children. “Kulang kasi sa advocacy (Advocacy is lacking),” she says.

IN 1997, DepEd released Order No. 26 requiring all divisions to organize at least one SPED center each to cater to children with special needs. At present, there are about 231 SPED centers across the country. Yet while some larger divisions (such as Manila) have 14 centers, there are also divisions that have zero.

Some schools without such centers do have SPED classes. Here in Maragondon, there is no SPED center; the local elementary school has a SPED class, but only for fast learners, not those with disabilities.

Notes Dizon: “Most likely, a typical barrio would not have a special (education) class. What usually happens is that the child with special needs is joined with other children in the public school. In a class of 50, they will have to teach the same lesson to all children. What will the child learn if he’s having difficulty in comprehending?”

Dizon also says that some parents, in their desire for their offspring to get any kind of education, would settle for a regular school even if it is not suitable for their special child. One result: “Because of certain requirements in school – that each child must meet this and that – the child, at a certain point, will drop out.”

It is the responsibility of a special child’s teacher, as well as the school’s principal, to assess whether their school requires a SPED class, says Zenaida Concon, DepEd SPED senior education program specialist. She says that children with special needs are identified when they enroll or when the teacher notices that a child in a regular class is a slow learner or cannot cope with the lessons because of a disability.

According to Concon, the educational requirements of even the children who are not enrolled, like Jay, should be included in any public school’s assessment. The principal should coordinate with the local social worker, she says, since the Department of Social Welfare and Development (DSWD) would have the relevant statistics from its family mapping survey. The school officials can also go to day-care centers, she says, to check on the needs of children under their school’s ambit.

Aida Profeta, who has been a social worker in Maragondon for almost two decades now, says that a Persons with Disabilities (PWD) survey is conducted every year. The English-language PWD profiler form is usually filled up by disabled child’s parents or guardians, who also have to submit a barangay clearance and the child’s ID picture to the local DSWD office. Only then would the DSWD be able to arrange whatever help can be extended to the child.

Profeta says that Jay Divina does not appear in any of her office’s records. She comments that his health seems to be in urgent need of attention and that the DSWD can arrange for him to have a check-up with major government hospitals like the Philippine Heart Center, with the Philippine Charity Sweepstakes Office perhaps footing the bill. The DSWD would take care of his transport expenses as well, she says.

Profeta promises to visit the family soon, but remarks that it is best to have a parent who is really keen on securing help for the child. She points out, “It’s nice if it’s two-way because there is a process that has to be followed.”

FAMILY MATTERS. If she had the means, Diana dreams of seeing all her seven children through college, Jay included. Photo by Karol Anne M. Ilagan.

FAMILY MATTERS. If she had the means, Diana dreams of seeing all her seven children through college, Jay included. Photo by Karol Anne M. Ilagan.

DIANA SAYS that she and Elena Mabutin, her live-in partner, visited the DSWD office here recently, but Profeta was out. She guesses that the social worker is still busy, that’s why she hasn’t gotten around to Jay’s case yet.

Diana confesses that when Jay was much younger, she had thought of giving him away. “Not that I wanted to turn away from my responsibility,” she says, “but I thought if there were just someone rich who would take him and have him treated, I would give him up, even if he was brought far away from here. What was important was that he would get treatment, because I wanted him to grow up as normally as possible.”

But Diana could not find anyone who would take care of Jay. Now, she says she realizes that “I am his mother. I am the one responsible for him. We will stay together wherever fate may take us.”

She does continue to worry about Jay, especially since he gets a check-up only during the medical missions conducted occasionally by the U.S. Navy in this town. The U.S. medical staff keeps on telling her to bring the boy to a specialist, prompting Diana to say, “If I had money, why would I not bring him to one?”

As it is, she says she no longer brings Jay to the municipal hospital whenever he has his seizures. Instead, she says, “I massage his chest, and then he would need plenty of air. After that, he’ll be relieved, and he’ll be able to sleep.”

Diana says she knows that the “remedy” she has concocted for Jay’s attacks may not be advisable. But not only does she fear his heart may no longer be able to take the injection the doctors give him every time he has a seizure, she also says each shot costs P300. Besides, she reasons, the hospital is a 10-minute tricycle ride away, and there have been times that Jay seemed just about ready to die during the trip.

She cannot recall ever being included in a DSWD survey. Then again, says Diana, she is always out working, as is Elena, who is a laundrywoman. Diana says she has never gotten any support for the children from her husband Jaime, from whom she separated years ago. If neither she nor Elena ventures out, she says, the whole family – which includes Elena’s three children – will have nothing to eat.

Herself a high-school dropout, Diana would want to see all the seven children in her household end up with diplomas, if she had the means. That would include even Jay, who she says dreams of going to school if only he could see properly.

“He only looks like a child, but he talks like an adult,” she says with palpable pride. According to Diana, her eldest is fond of music and even talks of maybe joining a band someday.

“If I ever find money while looking for discarded bottles, the first thing I will do is seek treatment for him,” she says. “I will have his eyes operated on, I’ll have each and every ailment he has treated, and his heart examined to see exactly what is wrong with it.”

“That,” says Diana, “is my lifelong dream.” – PCIJ, January 2011