CULTURE

This ability: How we can empower children with disabilities

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Nine-year old Krizelle sits at the rehabilitation ward of the Philippine General Hospital, where UNICEF, along with LAJ Philippines-LEGO, plans to establish a "one-stop-shop" to address unmet needs of children with disabilities. Photo by JL JAVIER

Manila (CNN Philippines Life) — Krizelle, who is nine years old, puts her prosthetic leg on with ease. She needs it after being diagnosed with osteosarcoma, which required one of her knees to be removed and her lower leg be attached to her thighs. In her pink dress, she smiles and speaks softly to her father, Nigel Mañalac, as they wait for a birthday party with other children with disabilities in the rehabilitation ward of the Philippine General Hospital (PGH) in Manila.

Krizelle and her father have been visiting PGH for treatment since September 2014. She had to undergo therapy to strengthen her leg muscles before the amputation. She also consults with the oncology department and has follow-ups with the rehabilitation unit, which is located in a separate building.

Nigel accepts it as a fact of life: he and his daughter have to walk from one building to another to complete Krizelle’s rehabilitation. But to walk, Krizelle expends twice as much energy as a non-disabled child, ever since her leg was removed.

What should be factual, however, is that facilities for children with disabilities, like Krizelle, should be located in one area, to make treatment easier. “Importante na magkakasama sila,” says Dra. Josephine Bundoc, a rehabilitation specialist at PGH. A child with disability (CWD) often needs different kinds of assistance from different specialists, which ideally should be accessible to them, a system which, in PGH, as with many other hospitals in the country, is not in place. At least — not yet.

The proposed one-stop shop in PGH is the first among four. Plans to develop an integrated service model for a rehabilitation hub for children with disabilities (one each in Luzon, Visayas, and Mindanao) are also underway. Photo by JL JAVIER

PGH — a state-owned hospital where some of the country’s best medical practitioners train to excel in their practice — is where UNICEF, with the support of LAJ Philippines-LEGO, will help establish one of the “one-stop shops” to provide better healthcare for CWDs in the Philippines, who number around 5.1 million. Of this number, 1.5 million need assistive devices, a largely unmet need since only percent of CWDs in the country has access to assistive devices. The rest — around 1.46 million — have to fend for themselves.

“Children with disabilities suffer from a lot of unmet health needs in the Philippines,” says Lotta Sylwander, UNICEF country representative. “On top of the actual health needs they suffer from stigma, they are unseen, unheard.”

Sylwander has been working on improving the plight of CWDs for years. “I’m not a disability specialist, not a doctor,” she says. “I’m an anthropologist, but disability issues have always been very close to my heart.”

Sylwander is on the right track: to help meet the needs of CWDs in the Philippines requires more than a purely medical approach. For one, there is little demand from parents for better services for their children with disabilities, a matter that surprises Sylwander. In Sweden, she says, parents demand for better services, demand that their children be treated better as humans.

There is also little literature available on CWDs. “The statistics are not good. We’ve been asking for solid statistics and there is too little,” she says.

Thus the plan to view the problem from three standpoints: by looking at societal attitudes toward CWDs; by reassessing the healthcare system; and of course, by focusing on the individual child. In PGH, all three come together.

"I’m not a disability specialist, not a doctor,” says Lotta Sylwander, UNICEF country representative. “I’m an anthropologist, but disability issues have always been very close to my heart.” Photo by JL JAVIER

The idea of a one-stop shop is simple: put all the specialists in one space in order to facilitate the consultation and treatment of CWDs. “Children won’t have to run around hospitals and towns searching for different specialties,” says Sylwander. In PGH alone, one has to walk several hallways and climb several flights of stairs — which is especially confusing for a first timer in the hospital — in order to reach different departments that may address the concerns of a CWD.

The one-stop shop is only the beginning of an integrated service delivery model for a rehabilitation hub for CWDs, which is to be developed into four platforms: one in PGH, and another each for Luzon, Visayas, and Mindanao. To supplement the one-stop shop is the development of a Philhealth benefit package for disabled children to address the financial sustainability of the whole project, which did not exist before.

“Often children need several different assistance from different specialists, whether it’s physical therapy to mental stimulation, to other things,” says Sylwander. “A blind child for example, needs a different thing from a deaf child.”

She adds, “There needs to be models for integrated services to ensure that all the different disabilities are taken care of right from the first day. There needs to be a sustainable financial package to ensure that these children can be taken care of. If the financial sustainability is not there, it’s not going to happen. It’s not a one-off thing, it’s something that needs to go on. And that’s where Philhealth comes in. “

True to Sylwander’s calling as an anthropologist, an important strategy is to demand awareness about how CWDs are treated in the local healthcare system. For its part, Lego, as represented by Patrick Pesengco of LAJ Philippines-LEGO, promises to “galvanize parents for a common purpose,” by putting the issue out there through its shops, which will take part in changing cultural attitudes about CWDs.

Inside the prosthetics center of PGH. Photo by JL JAVIER

Founded in 1907, the PGH is considered the country’s best hospital, where its poorest go for both regular and specialized treatment. But its halls, as any visitor might immediately notice, are already laden heavy with the burden of the years. The walls show visible signs of wear and tear, and the stairs are steep and are a challenge to climb.

Inside its labyrinthine hallways, it’s easy to get lost. For a child with disability, to get treatment here is in itself a challenge apart from the actual disability, and speaks of the current lack of capacity of the healthcare system to address the needs of CWDs. Yet PGH may be the only hospital as of the moment — at least partially — to provide some services to disabled children. “Very many other hospitals are unable to provide services — rehabilitation, even diagnostics, for disabled children,” says Sylwander. “They don’t have the money, they don’t have the capacity. They don’t have the trained staff to meet the needs.”

Back in the rehabilitation ward, James, who is 10 years old, likewise waits eagerly with Krizelle to celebrate a birthday party. He carries a cane with him wherever he goes, and is already in the third grade. He plays various musical instruments, and is top 2 of his class. He’s blind and deaf.

To help meet the needs of children with disabilities in the Philippines requires more than a purely medical approach. Aside from DOH, UNICEF also plans to bring DepEd into the core of the program. Photo by JL JAVIER

Outside the healthcare system, there exists a stigma attached to the disabled child, a lack of acceptance that merely manifests itself in how society takes care of CWDs.

“The acceptance of a disabled child and the stigma that is possibly put on that child, right from the beginning, is a societal problem, as far as we are concerned,” says Sylwander. “And also the fact that very few families, local governments, and so on are able to provide a good quality life for children with disabilities.”

CWDs are even seen as stupid sometimes, according to Sylwander, even though their disabilities have nothing to do with brain capacity.

Thus the need to start where it matters: in the mindset. Sylwander emphasizes: “You need to change the general public attitudes towards these children with disabilities … We need to get it out there — the compassion, understanding, plus the support from the general public to the children with disabilities and PWDs in general.”