MANILA, Philippines — Cerebral Palsy (CP) is a condition that affects the human brain’s cerebrum, causing developmental problems on human functions such as movement, learning, hearing, seeing, and thinking.

There is no known cure for it, yet a person with CP may be treated with several therapies to help him/her be an independent individual as much as possible. These therapies may include physical, speech and occupational therapies.

In the Philippines, the average cost of one therapy session is between R600 to R800. Parents thus can only lament about the rising costs.

“Napakamahal ng mga therapies. Para sa aming hindi mayaman, hindi namin talaga kayang magbayad,’’ shares 49-year-old Joseph Tribiana, father of nine-year-old Maria Pillar. The youngest among Tribiana’s three children, Maria Pillar has cerebral palsy. She is supported by her father, a retired jeepney driver who relies on occasional jobs as a driver, and her eldest sister who already works as a midwife. But their earnings are still not enough.

Silver Lining

Fortunately, Tribiana found a silver lining when he discovered in December, 2010 that Philippine Charity Sweepstakes Office (PCSO) had a program that offered free therapies and developmental assessments to underprivileged children with special needs, through the Neuro Developmental Unit (NDU).

The NDU was established in October 2003 under then PCSO chairman Maria Livia de Leon. It catered to pediatric cases, specifically to children with CP, autism, Attention Deficit, Hyperactivity Disrder (ADHD), and others exceptionalities.

NDU offered indigent families free services in developmental paediatrician assess ments, consultations and most importantly, therapies.

According PCSO Fund Allocations Department manager and spokesperson Dr. Larry Cedro, NDU also provided parents with training on basic therapies that they could do in their homes, given that the program typically ran a period of three to four months only, per patient.

“We believe that our services should not be limited to the actual therapy but there is a need for a follow-through. The thrust was to provide parents with enough training for them to do the follow through in their respective houses. Parents play a vital role in the development of their children so we asked them to take an active role,” he says.

NDU had to filter the patients because they could only cater to the poorest families. “Hundreds of patients applied for therapy services.

There were also families coming from different areas like Laguna and Cavite,’’ Dr. Cedro explains.

No more therapies

Tribiana was more than happy when her daughter was chosen to avail of the services offered by NDU. Since Maria Pillar started her therapies under NDU, she showed a lot of improvement. She was in fact already close to learning how to walk and speak.

“Maganda ang programa nila, very unique from the hospitals and centers na may bayad. Kasi kahit sa public hospitals may bayad. Sobrang malaking tulong para sa mga katulad naming magulang,” Tribiana says.

But Tribiana and other parents hit a blank wall when PCSO recently closed down NDU. They are thus at a loss as to where to take their children who badly need regular therapies.

“Dapat nakakapaglakad na siya kaso nga lang natigil ang therapy.

Nakakagabay na siya. Nakakabanggit na rin siya ng mga letters,” Tribiana laments.

Dr. Cedro explains the move. “NDU was temporarily closed down last July because we’re about to transfer to a new location and we lack space.”

The unit was located at the old Pediatric Building of the Quezon Institute (QI) along E. Rodriguez Avenue in Quezon City, which is owned by the Philippine Tuberculosis Society, Inc. This is the same building where the Center for Life Improvement and Health Development (CHILD) Haus was housed. CHILD Haus was recently kicked out of the facility by PCSO.

Dr. Cedro clarifies that there is no space for the NDU at PCSO’s new location inside Lung Center of the Philippines compound in Quezon City.

But he adds that they are still talking with the administration of the East Avenue Medical Center (EA MC) where they plan to reinstate NDU. “We are now coordinating with our partners to explore the possibility of them housing the NDU and its patients.”

Reinstate NDU

Tribiana however recalls that even as early as April, NDU had already stopped rendering its services. Standing as the leader of a parent group which is ironically called Parents and Children with Special needs Organization (PCSO), Tribiana leads the protest against the closing down of the special unit.

Before it temporarily shut down, NDU had helped more than 2,000 children in need of special therapies.

At the time of its closure, NDU had around 90 children in its stead. NDU also had a special neuro developmental pediatrician, two speech therapists, two occupational therapists, and three in-house physical therapists. Today, these 90 children are not receiving any therapies.

Tribiana chooses to take matter in his own hands. “Ako na lang ang gumagawa sa bahay, tinutulungan ko na lang ang anak ko. Kaso nga lang sementado ang bahay namin, hindi katulad dun sa therapy center na padded. Maganda sana kung tuloy-tuloy hanggang sa matapos niya ang program.”

His daughter is also going to school at P. Gomez Elementary School, under its Special Education Center.

Leters to Chiz, Jinggoy and Kris unanswered

According to Tribiana, their group had written letters to different individuals and organizations because of fear that the unit would not be reopened.

They wrote to the officials of PCSO, the National Council on Disability Affairs, the Department of Social Welfare and Development, politicians like Senators Chiz Escudero and Jinggoy Estrada. They even wrote to the presidential sister, celebrity Kris Aquino, thinking that she would answer since she could relate to their plight, having a child with special needs herself.

Unfortunately, all but one of the letters came answered. Only one board member of PCSO replied, but with a rather unclear and indefinite stance. This fuelled the parents’ fear even more.

“Ang mga magulang na katulad namin hindi kayang ibigay ang lahat para sa aming special child. Nahihirapan din kami sa pag-aalaga. Ang programa ng PCSO ang tumutulong sa amin para hindi maging pabigat ang aming anak sa lipunan. Hindi namin kayang magbayad sa private. Sana mapag-ukulan ng pansin itong programa at ang mga bata,” he laments.

Dr. Cedro is quick to allay the parents’ fear. “Most of the parents think that we cancelled the program. No. The thrust of the current management is to explore the possibility of the program to be housed at East Ave. Medical Center,” he reiterates.

“We have to see to it that we have a place that we could showcase to the parents that this is now the place, the home of the NDU. Rather than telling them that we’re resuming without giving them a concrete position. I think it is but right for us to explore first, find the best location, and then we tell them. We will mobilize once we close an agreement with EAEAMC.”

He asks for the parents’ patience, saying with a new location for NDU, they hope to accommodate more children in the new NDU to be reopened before the year ends.

Left with nowhere to turn to, Tribiana and the other parents could now only hope and pray.