Cop­ing with spe­cial needs

The Star Malaysia - Star2 - - LIVING - By IVY SOON star2@thes­tar.com.my

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.

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