A Future in Pieces

by Karol Anne M. Ilagan

WEDNESDAY, JANUARY 5TH, 2011

DESPITE the many laws that recognize the rights of children with special needs,
there is still no comprehensive law that mandates special education in the
Philippines. As educator Dr. Edilberto Dizon points out, nurturing children with
special needs is simply not a priority in the Philippine educational system. The
thrust of education in this country, he says, has always been in the provision of
more facilities for the growing school population – and even that has been a
chronic problem for the

“Will the education of special children be more important than mass education?”
Dizon asks. “The needs of the majority have yet to be fulfilled. How much more
for those in the minority?”

“If (education) priorities are met,” he says, “there should have been more SPED
programs and inclusionality programs. More teachers (should have been) trained
and retained and not encouraged to leave the country.”

In the meantime, legislators are attempting to add more to the pile of laws on
special education. At the Senate, pending at the Committee level are at least 11
bills that aim to improve the special education program in the country. Among
these are Special Education Act of 2010 (SB No. 907), introduced by Senator Jose
‘Jinggoy’ Ejercito Estrada, and Special Education Act (SB No. 1912), introduced
by Senator Miriam Defensor Santiago.

Once ratified into law, both bills would institutionalize an educational program
for every child with special needs through the establishment of SPED Centers – at
least one for each school division and at least three in big school divisions. A
Bureau of Special Education would also be created to institutionalize and govern
special education in the country.

At the House of Representatives, at least seven bills with similar objectives have
been filed.

Yet even if these bills are passed into law, they may do little in fulfilling special
education’s goal of making a child with special needs nearly as capable as other
children through the provision of all the opportunities and appropriate support.
At the very least, they probably would not have much impact on society’s
understanding and appreciation of those who are “different.”
“We need a community that strives for the advocacy for special children,” says
Dizon. “So we need public education in that regard.”

That this is lacking can be seen partly in the severely limited work opportunities
for people with disabilities. Says Dizon: “In the end, when special people start
getting into education, they eventually transit into work opportunities. The
community will have to provide work opportunities…for such people so that they
will be reassured of a future.”

“When you talk of a special child,” he notes, “definitely you will talk of a future.
You do not only look at it piece by piece, you have to look at it long-term.”

The reality, however, is that community support for those who are either
mentally or physically challenged can be hard to come by. Center for Possibilities,
Inc. founder Dolores Cheng, for instance, notes the lack of public toilets and
water fountains that are special child-friendly. She comments, “The absence and
inaccessibility of these services make it difficult and almost impossible for
special-needs children to be independent.”

It’s bad enough, she says, that there is no infrastructure available for these
children that is comprehensive and continuing.

“Try to imagine a special child commuting,” says Cheng, “it’ll be a

challenge. Baka pa nga madisgrasya ‘yung bata (The child may even meet an
accident).” – PCIJ, January 2011
Are you still ‘special’ if you’re poor?
by Karol Anne M. Ilagan
WEDNESDAY, JANUARY 5TH, 2011

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.

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.

PCIJ series on special and gifted children:

Dilemmas on the ‘Different’

Part 1: Bringing Up Sammy

Part 2: The Gifted Give Back

Sidebar: Living by Numbers

Part 3: Are you still ‘special’ if you’re poor?

Sidebar: A Future in Pieces

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.

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.
“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.

“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.

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.”