Coping with special needs
AZLINDA Ali’s family has always been careful with their spending, but lately they have had to watch their expenditure even more closely. Raising four children in Kuala Lumpur on her husband’s income as a retail manager is challenging, especially when two of their children are disabled.
“There is enough to meet our needs, but there are no extras. There are things we have to buy, like diapers for my bedridden daughter. She needs at least 10 packs a month.
“Prices of food, milk and electricity have all gone up. These days, we only have fish once a week, and hardly any other seafood because it is too expensive for us. I usually cook rice with one protein and one vegetable. It has always been like that, but now there is not much variety,” says the 49-year-old mother who is devoted to looking after her disabled children.
The government gives her children RM300 each in disability aid every month but she is worried that will stop soon.
“I have heard from friends that their children’s disability aid has been stopped. They had to resubmit their application. It took us a few years to apply to get aid.
“The aid is for those with a household income of RM3000, regardless of how many dependents we have or whether they are disabled . I am worried we will no longer qualify. My husband’s income has increased, but so have our expenses. And, he is close to retiring,” says Azlinda, who is also putting a son through university. Another son is waiting for his SPM results.
For them, every ringgit counts. Her husband’s income is steady but most of his allowances have been cut since last year, leaving them with only his basic salary to cope with costs.
Azlinda’s daughter Nuramilia Mohd Izhar, 23, and son Muhammad Nain,15, go to the Persatuan Kanak-Kanak Istimewa (PPKI) in Hulu Langat for therapy and special needs education.
She’d not have been able to afford therapy for Nuramilia and Nain had they not been enrolled in PKKI which charges a nominal fee (deemed as a donation). Even though the cost of therapy here is cheaper than in other private practices, they have also gone up.
“This year, the centre has increased transportation fees from RM80 to RM100 to ferry my children and me from our home in Ampang to the centre thrice a week. One of my children’s fees is sponsored. But when their fees went up, I paid the difference instead of asking the sponsor… seganlah.
“This year, the sponsorship will end and we’ll have to start paying their fees ourselves,” says Azlinda.
PKKI administrator Jennifer Leong said they have had to increase their fees and transportation charges by about 30% this year due to rising costs.
“We had to charge more for transportation after the price of diesel went up last year. This year, we also had to increase the salary of our staff as they too need to cope with rising costs of living. They are providing essential services for the children and we need to pay them fairly,” says Leong.
It costs about RM50,000 a month to run the centre that caters to 88 students. Most of their funding is from public donation. Last year, the centre received RM15,000 funding from the government. The amount varies each year and they will only know in July how much their allocation for this year will be.
PKKI also has had to scrutinise their spending closely as they have to stretch their funds to make sure they have enough for the uncertain future. Some needs, such as therapy, cannot be compromised but the centre tries to save wherever they can.
“The costs of utilities and foodstuff have all gone up. We used to give the children a lunch of rice, chicken, vegetables, fruits and a yoghurt drink. But this year, we have cut down on our food spending and serve them fried noodles instead.
“Parents understand that it’s because we are trying to conserve our funds,” says Leong.
If you’d like to support PKKI’s work, visit www.pkki.org.
Providing therapies and care for disabled children is more challenging in hard times.
Good care: azlinda ali (right) has been sending her daughter Nuramilia Mohd izhar to Persatuan Kanak-Kanak istimewa Hulu Langat for the past 18 years because it’s her most affordable option.