81.4 percent of Malaysian Cerebral Palsy individuals come from poor families

October 6 is World Cerebral Palsy Day.

Oct. 6, 2021

81.4 percent of Malaysian Cerebral Palsy individuals come from poor families

Cerebral Palsy is among the least talked-about mobility disorders.

According to the U.S. Centers for Disease Control and Prevention (CDC), the disorder typically affects a person's posture, ability to move, and ability to maintain balance.

It's the most common form of motor disability among children due to abnormal brain development or damage that causes weaknesses in the body's muscles.

We need to talk about Cerebral Palsy.

Due to this, many people with Cerebral Palsy often have difficulty walking. Others, especially those who are more severe, are often bedridden and require 24/7 care.

Many of those with Cerebral Palsy also have other related conditions and experience problems with eyesight, hearing, speech, seizures, and intellectual disability.

A complex problem for Malaysia's poor.

The majority of individuals with Cerebral Palsy are either bedridden o wheelchair bound. IMAGE: Cerebral Palsy Malaysia.

In Malaysia, however, the problem is much more complex, according to Rafizah Ahmad, especially when economic uncertainties are thrown into the mix.

"The cost to care for a Cerebral Palsy family member can be high," she told Mashable Southeast Asia recently over a video call.

Rafizah, who cares for her 16-year-old Cerebral Palsy daughter together with her family, estimates that her monthly cost balloons up to RM3,000 (US$716) a month.

Rafizah Ahmad founded the Alliance of Children with Cerebral Palsy (GAPS). IMAGE: Harian Metro.

"Most of the money is spent on treatment and equipment, and also transportation to the healthcare centers."

For families with a higher earning power, it is a little more easy, as they're able to hire caregivers and are able to purchase better equipment for loved ones with Cerebral Palsy.

"But what if you come from a poor family and aren't able to afford these treatments?"

The 46-year-old, who is also the founder of Alliance of Children with Cerebral Palsy (GAPS) – a non-governmental organization made up of people with Cerebral Palsy family members – revealed that her findings among the 392 members were concerning.

"Through an online survey, my team and I discovered that 81.4 percent of families with Cerebral Palsy individuals are below the B40 line."

B40 is part of Malaysia's income classification. Households and individuals who earn less than RM4,849 (US$1,158) are often classified as B40, the lowest tier.

The lack of financial resources typically impacts individuals with Cerebral Palsy as they end up with all kinds of health complications.

"Because they lack financial resources to purchase proper equipment and provide better treatment, many of their family members with Cerebral Palsy eventually suffer from other kinds of ailments such as breathing difficulties, spinal problems, and more."

It's not just financial.

Cerebral Palsy caregivers are among the strongest people you'll find. IMAGE: Harian Metro.

Many group members with whom I spoke to expressed the hardship of having to care for their Cerebral Palsy loved ones.

In fact, my twin brother was diagnosed with Spastic Quadriplegia Cerebral Palsy. So I am familiar with some of the problems they face.

All of the caregivers agree that they experience things like unwanted glares and stares, to insensitive questions and comments, and even to anxiety, depression, and loneliness.

"I also noticed that I had difficulty procuring information on Cerebral Palsy. When I gave birth to my daughter, I struggled to find information as majority of them were U.S. related and in English."

This was what inspired Rafizah to create GAPS in 2016 together with others.

"GAPS today empowers and educates households with Cerebral Palsy loved ones. We do it through workshops, trainings, outings, and more."

Rafizah hopes that the NGO is able to support more families with Cerebral Palsy loved ones and hopes that the Malaysian government supports caregivers through financial, equipment, awareness, and employment aids.