Lending the Lesser-abled a Hand

loading With inspirational sayings looking down on the corridors, CPCAP looks a lot like any other school in the country.

The learning centre of the Cerebral Palsy (Spastic) Children’s Association of Penang is a boon to patients and parents alike.

The Cerebral Palsy (Spastic) Children’s Association of Penang (CPCAP), which turns 56 this year, houses a fully functioning school that prepares children with cerebral palsy to enter mainstream schools and educates those who are not yet able to do so.

Cerebral palsy is a non-progressive disorder that primarily affects body movement and muscle coordination. It stems from damage to a child’s brain while the brain is developing, either before, during or immediately after birth. The severity of the disorder depends on both the type and timing of the injury to the brain, and thus, is unique to each individual suffering from it. As a result, cerebral palsy cases can differ widely, though most people tend to associate cerebral palsy with its most extreme cases of widespread paralysis and tremors.

A Dedicated Centre

CPCAP is located on a 0.7ha plot of land on Jalan Masjid Negeri. It was known as the Spastic Children’s Association of Penang (SCAP, an acronym by which it is often still referred to today), and was established in February 1962 by a small group of pioneers who recognised a lack of services in the state for children with cerebral palsy. With the objective of creating a proper treatment facility to aid those with this disability, the Penang Rotary Club took up the initiative, and an inaugural meeting was convened under the Malaysian Council for Child Welfare.

The organisation also had several other key objectives, which included compiling a list of all spastic children in the state, educating the public on cerebral palsy, raising funds for the welfare and treatment of children with the disorder, and networking with the government and NGOs to pursue the interests of children with cerebral palsy.

The first treatment centre caring for five children was housed in the hall of St Andrew’s Presbyterian Church on Codrington Avenue in 1963 before the association moved to the mansion of Lim Cheng Ean at 67, Northam Road in 1966. There, it welcomed two volunteers from the U.S. Peace Corps: special education teacher J. Wynn and speech therapist Rose G. Forney; this marked the start of a long line of trained, foreign volunteers coming to lend a hand at the centre.

Meanwhile, work on a more permanent facility was carried out on a piece of land leased from the trustees of Lam Wah Ee Hospital with the assistance of noted Penang entrepreneur Loh Boon Siew. It was opened on August 26, 1967 with two classrooms, a hall, office, storeroom, kitchen and toilets.

CPCAP honorary secretary Valliammal Allagappan.

The school section was officially registered with the Education Department in 1969, with a pre-school section set up the following year. These two entities, more than anything else, would be the bedrock of the association’s outreach to children and families dealing with cerebral palsy. Over the next three decades, a therapy swimming pool, playground, Snoezelen room and building extensions would be undertaken by the association, which changed its name to CPCAP in 1994, along with the constant upgrading and re-innovation of treatment methods and programmes in line with medical advances.

Schooling at CPCAP is free of charge and all students attend individualised half-hour physiotherapy sessions, occupational therapy and speech therapy sessions, and hydrotherapy sessions using the Halliwick Swimming Method in the centre’s solar-heated swimming pool.

Early intervention

With a dedicated cerebral palsy centre (there are only three such centres in the country, the other two being in Johor and Selangor), children with cerebral palsy in Penang have an immediate lifeline to early intervention and specialised childhood education.

Long-serving, retired administrator and now honorary secretary Valliammal Allagappan says it all begins with parents and caregivers noticing missing developmental milestones in their children. “Cerebral palsy is generally measured by posture early on. When a baby is small, we don’t really see the mental effects of cerebral palsy yet, but we do notice when a child is not rolling over, cooing or hitting the development milestones,” she says.

Children come to CPCAP both with and without doctor referrals, and further assessment is done after their arrival. “First, our social work coordinator will talk to the parents to open a file. The child will then be assessed for about an hour by our group of therapists, which includes an occupational therapist, physiotherapist and speech therapist.

“Finally, our paediatrician, Dr Dan Giap Liang from Island Hospital – who volunteers his lunch hours on alternate Wednesdays to see our children – will come, find out the history and development of the child, and confirm whether or not it is cerebral palsy. If it is, the child is admitted to the school; if not, Dan will give a referral letter to another organisation or, if he is very unsure about what condition the child has, to the Penang General Hospital (GH). We try to make our admission process very simple, and it is at no cost to the parents,” says Valliammal, who served as CPCAP’s administrator for 22 years.

After becoming members of the centre, individualised treatment plans are formulated for each child and the therapists work on a one-to-one basis with the parents for about a month to teach and advise them on how to start helping their children.

The small ones go on to join the Early Intervention Programme (EIP) – where one parent or guardian has to be present at all times as the children are very young – and the preschool class, which mimics a kindergarten-like environment.

“We are now getting babies as young as three or four months coming in. Nowadays, hospitals and doctors are much more aware of conditions like cerebral palsy, so we are catching it earlier,” says Valliammal, who abolished the waiting list for admission during her tenure. “Previously, some children had to wait years to get admission here, mainly because we did not have the resources to help everyone. It must be understood that the earlier a child gets admitted, the easier it will be – otherwise the pattern sets in and that is harder to break. If you start them earlier, you can start the right exercises and stimulations right away, as well as the right techniques and approaches at the right time,” she says.

Student Isabelle Hiew in a hydrotherapy session at CPCAP's solar-heated swimming pool.

Preparing the Students for the Future

From the age of six, children who are able to cope are enrolled into integrated programmes at mainstream schools. However, for severe cases of cerebral palsy and children who need a bit more time and help, CPCAP conducts two lower primary classes and one upper primary class.

Head of School Services Azlina Mohd Yusoff says the first two classes – Kelas Zamrud and Kelas Baiduri – focus on sensory play, basic academics and practical self-help. The upper primary class – Kelas Jed – is more of an academic class to improve the potential of students in various aspects. “Students in each class range from age six to 19 and are grouped more on the level of their abilities rather than age,” explains Azlina who with 27 years of service is the longest-serving teacher at CPCAP.

Ankle-Foot Orthotics (AFOs) and other supportive footwear help the children at CPCAP learn to walk.

To open up avenues for future employment, Azlina says CPCAP also runs a Pre-Vocational Class, which provides simulated work experiences, and a Practical Class that trains young adults in baking, sewing and laundry services. The ultimate hope is that each will be able to get jobs in open employment and find some kind of financial independence after their school-going years, she adds.

That, unfortunately, is not always possible. Thus, the association also houses a Sheltered Workshop with support from companies like IRM Industries, which provides work opportunities for people with special needs aged 21 and above.

CPCAP has a total staff of 39, including teachers, support staff and seven trained therapists. But with 147 children currently registered with the association, the days are jam-packed and many quarters – from the therapists who see 35 students a week, to the children who crave the learning and the parents who are bolstered by the progress – often wish there were just more hours in a day and more resources for additional teachers and therapists.

Funding represents the single biggest challenge the association faces. Its expenses reach approximately RM1mil a year – about RM90,000 a month – with around 90% going to the salaries of staff and support staff.

Roughly 40% of funding comes from the Department of Social Welfare (JKM), while the excess is raised by donations. One major fundraiser is organised a year, usually a food fair, charity dinner or a walk/jog/wheela-thon – a unique speciality of CPCAP – while donations are also collected in the “foster a child” programme during the annual Sports Day. In 2016 these yearly fundraisers raised around RM200,000 and RM80,000 in proceeds respectively.

CPCAP president Ng Fook On, who took the helm in 2005, says corporate companies and big trust funds contribute the bulk of donations that keep the school running. “Fundraising is our biggest challenge, especially in these last couple of years. Ten years ago, there were fewer NGOs, but now, there are so many. It’s like the pie is the same, but we’re cutting the slices thinner and thinner,” he says.

Partnerships have been very successful in advancing CPCAP’s services, for example with Leader Holdings and Dell Malaysia, which have been instrumental in setting up and maintaining the centre’s vocational training centre and the Dell Learning Centre computer lab respectively. Public donations in cash and kind also greatly support the association.

However, in recent tough financial and business climates, CPCAP is seriously looking at cost-cutting efforts to keep their expenses at a more manageable level. This has meant measures like restructuring their transportation services for students into staggered sessions with fewer vans and shorter gaps between pick-up times, as well as opting for part-time workers for certain jobs like gardening.

An occupational therapist in a session with a child at CPCAP.

One Step at a Time

Working with children who have special needs is often challenging and demanding, but the kids make it well worth the while, staff at CPCAP all say.

EIP and Preschool department head Norjan Osman, who has taught at the association for 26 years, says knowing she made a difference in someone’s life is everything. “Mental retardation in cerebral palsy children is generally at a low level. That is one reason why the condition is very hard on children – they see other children walking and moving and the mind wants to follow, but the body does not respond accordingly,” she says.

The challenge is finding the right method to suit each individual child, which is something Norjan looks forward to everyday. “Each child is different, but with cerebral palsy, sometimes small things make a big difference. We have to think about modifying our methods to suit each child, and that is the thing that motivates me. When something finally works, you feel so good and think, ‘Yes, I really did something that helped!’”

And each step, no matter how small, is another step forward.

Two of CPCAP's longest-serving teachers, Azlina Mohd Yusoff (right) and Norjan Osman, who are also the school section, and EIP and preschool heads, respectively.

For May Goh, 44, the centre has been a godsend for her family. A brain tumour was detected in her son, Chuah Han Wei, who is now 11, when he was just five weeks old. “He had surgery and when he was two and a half months old in 2006, he started chemotherapy in GH and was the youngest chemo patient in Penang that year. He had a 10% chance of survival, but very luckily, he survived,” says May, adding that Han Wei has a twin brother, Chuah Han Sheng, who is younger than him by a couple minutes.

Beating cancer, however, was just the start of the challenges the family has had to weather as Han Wei was later diagnosed with cerebral palsy and visual impairment. May explains that he was non-verbal until very recently, which made treatment very much harder. “I remember when he was three and sick. We took him to the hospital and he cried non-stop for almost three days. Even the doctor told us that he did not know how to treat Han Wei as he couldn’t speak. I then realised that I had to do something, so I learned Makaton, which is a sign language, and taught it to him – at least he can communicate with words like ‘eat’, ‘milk’ and ‘pain’, and tell us where it hurts,” she says.

Enrolling him in CPCAP further helped the situation, as May could not find outside kindergartens that would accept her son. After eight years, May says she has seen several good improvements in Han Wei’s development. “It takes him a long time to learn some things; for example, it took three years for him to be able to feed himself or learn to wave ‘bye-bye’. Sometimes, there is a lot of improvement, then he goes back to the way he was before. We have to be patient,” says May, who is a member of the CPCAP parent-teacher association.

May Goh, 44, with her son Chuah Han Wei, 11, who studies at CPCAP.

For many parents at the centre, the idea of their children coming to an age where they can no longer attend school is daunting, especially since progress with cerebral palsy children is often a drawn-out process. “We feel that there aren’t enough years (for him to learn), and we are short of time. Last year, Han Wei spoke a bit. I felt so very happy – his speech isn’t clear, but at least he can communicate and the teachers can understand him,” May adds.

Han Wei cannot yet walk, but his teachers and family continue to be hopeful and are diligent with his daily exercises. May says it is her ultimate hope that he will be able to perform all his daily self-care, making it easier for whoever cares for him in the future. “It is my dream that Han Wei and I will be able to help other disabled people as volunteers in centres like these. If I were to keep him at home, we would just be doing nothing. At least we can go out and help other families with special needs who really need the extra help and support,” she says.

Han Wei is now a student in Kelas Jed and possesses a smile that lights up a room – a trait his mother has, though she will likely deny it. “During those early years when he was crying so much, I prayed to God that he would smile. Now, he is always smiling, and those smiles are good for me, too,” she says.

For more information and to help, visit CPCAP’s website at www.cerebralpalsypenang.org, or contact them at +604 657 0160 or email pgcerebral@gmail.com
Andrea Filmer is a freelance journalist who has lived in the US and Australia but, for reasons unknown to herself, finds it impossible to call anywhere but Penang home.

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