Article in Berita Harian regarding OKU allowance (person with disability allowance)

I wrote to the local newspaper, highlighting on the issue of OKU allowance. Technically, all registered person with disability should get about RM150 per month. But in reality, there are so many red tapes and bureaucracy involved. My hope is to get the attention of the ministry in charged to facilitate and expedite the process of allowance distribution to all registered OKU people.

This article was published in Berita Harian on Friday 27th June 2014. Unfortunately, there was no online version available. Below is the article as appeared in the printed version in Berita Harian.

Saya ingin mengambil perhatian Yang Berhormat Menteri Pembangunan Wanita, Keluarga dan Masyarakat YB Dato’ Sri Rohani Abdul Karim, serta pegawai-pegawai yang bertanggungjawab dalam pengagihan elaun Orang Kelainan Upaya (OKU).

Saya adalah seorang Pakar Perubatan Keluarga di Pusat Perubatan Universiti Kebangsaan Malaysia yang banyak berurusan dengan kanak-kanak yang mempunyai masalah pembelajaran dan dikategorikan serta boleh didaftarkan sebagai Orang Kurang Upaya (OKU) serta orang dewasa OKU.

Saya juga mempunyai ramai kenalan yang mempunyai anak-anak OKU dan aktif dalam kumpulan sokongan ibubapa kanak-kanak sindrom down.

Setiap anak OKU samada sejak dilahirkan ataupun kemudian, atau dilihat mempunyai masalah pembelajaran yang boleh dikategorikan sebagai OKU selepas dinilai oleh doktor atau pakar, mereka layak didaftarkan sebagai OKU.

Sebagai seorang doktor, saya akan memaklumkan kepada ibubapa mereka untuk memohon kad OKU dan menerangkan pelbagai kemudahan dan manfaatnya. Ini termasuk elaun OKU sebanyak RM150 sebulan yang sekurang-kurangnya dapat mengurangkan beban keluarga dan boleh digunakan untuk membeli keperluan untuk anak mereka mahupun untuk kegunaan sesi terapi dan pembelajaran anak tersebut. Bajet tahun 2005 memperluaskan lagi elaun ini kepada kanak-kanak OKU yang mengikuti Program PDK atau Sekolah Khas Pertubuhan Sukarela Bukan Kerajaan.

Pelbagai syarat, terma elaun OKU 

Namun, realitinya tidak sebegitu. Terdapat terma dan syaratnya sebelum elaun tersebut dapat diberikan kepada anak-anak OKU yang telah didaftarkan.

Terdapat pelbagai ‘versi’ pengagihan elaun OKU ini. Berikut adalah cerita di sebalik elaun OKU seperti yang dimaklumkan oleh ibubapa anak-anak OKU kepada saya:
1.    Anak Sindrom Down yang mempunyai kad OKU yang mengikuti terapi di pusat kendalian NGO atau PDK mendapat jumlah elaun yang berbeza. Ada yang dibayar penuh, ada yang dibayar separuh dan ada yang tidak dapat langsung bergantung kepada pengurusan pusat berkenaan.
2.    Anak yang disahkan mengalami ketidakupayaan lain seperti Autisme, dyslexia dan cerebral palsy dan mempunyai kad OKU yang menghadiri kelas terapi/pemulihan di pusat-pusat persendirian (swasta) ataupun di bawah kendalian NGO tidak mendapat elaun tersebut.
3.    Anak OKU yang berdaftar dengan PDK tetapi tidak cukup kedatangan kelas 8 kali sebulan tidak diberikan elaun tersebut.
4.    Anak OKU yang berdaftar dengan PDK dan menjalani terapi di rumah diberikan elaun RM50 sahaja.
5.    Ada elaun anak ini yang diuruskan oleh PDK dan dimaklumkan kepada penjaga bahawa elaun berkenaan perlu ditolak elaun makan dan pengangkutan serta insuran. Justeru anak ini mendapat RM50-90 sahaja sebulan
6.    Anak OKU yang telah memasuki tadika persendirian berdaftar tidak mendapat elaun OKU
7.    Anak OKU yang mempunyai kad OKU tetapi tidak berdaftar dengan mana-mana PDK tetapi menghadiri sesi physioterapi, terapi cara pulih kerja di hospital tidak mendapat elaun OKU

Itu hanyalah sebahagian daripada realiti yang dihadapi oleh anak-anak OKU dan keluarga mereka. Buat pengetahuan, tidak semua anak-anak ini dapat mengikuti program di PDK secara tetap dan berkala seperti yang disarankan oleh pihak Kemeterian dan PDK iaitu kehadiran sebanyak 8 kali sebulan.

Sebagai contoh, kes-kes Sindrom Down dan Cerebral Palsy kadangkalanya berkaitan dengan masalah kesihatan lain seperti masalah jantung berlubang, Gastoroeesophageal reflux disease dan sawan yang boleh membataskan kanak-kanak berkenaan daripada menghadiri program PDK secara berkala.

Ia juga turut bergantung kepada keperluan seseorang pesakit, yang mana mereka akan dirujuk ke program fisioterapi atau carapulih kerja di hospital secara berkala dan mereka tidak berkesempatan untuk mengikuti program di PDK atau pusat pemulihan lain yang dikelolakan oleh NGO seperti Kiwanis.

Ibubapa bekerja terpaksa cuti masa hadir temu janji 

Walaupun inginkan yang terbaik untuk anak mereka, kebanyakan ibubapa kanak-kanak ini bekerja dan perlu  mencuri masa untuk membawa anak mereka ke temujanji doktor selain kelas terapi dan pemulihan.

Waktu yang diluangkan para ibubapa untuk memenuhi keperluan terapi dan rawatan anak OKU menuntut mereka untuk mengambil sebahagian daripada waktu berkerja, justeru adakalanya tidak dapat menghadiri sesi terapi ataupun temujanji yang kerap kerana tidak dibenarkan majikan.

            Sebagai ibubapa, mereka tentunya mahukan yang terbaik untuk anak istimewa mereka. Jika mempunyai program PDK berdekatan dengan rumah mereka, sudah tentu anak mereka didaftarkan dan mendapat terapi yang berkaitan di sana. Ada yang mendapatkan khidmat fisioterapi atau ahli terapi cara pulih kerja persendirian yang datang ke rumah mahupun mendapatkan rawatan di pusat perubatan ataupun pusat terapi swasta. Ada yang menghantar anak mereka ke pusat khas kelolaan pertubuhan sukarela atau NGO yang mengenakan bayaran yang bersubsidi.

Bagi tempat yang jauh dari kemudahan milik kerajaan mahupun swasta, kumpulan sokongan ibubapa anak OKU itu berpakat memanggil dan menggaji ahli terapi daripada tempat lain untuk memberikan khidmat, tunjuk ajar dan melatih mereka dan anak istimewa berkenaan dengan kaedah yang betul.

Ada yang langsung tidak tahu mengenai kepentingan stimulasi awal bagi meransang perkembangan anak mereka dan tidak mendaftar sebagai OKU kerana mereka tidak tahu ke mana hendak dituju.

Seharusnya pihak kementerian turun padang dan meninjau serta memantau apa yang berlaku di lapangan dan sewajarnya langkah diambil untuk memastikan anak dan orang dewasa yang layak didaftarkan sebagai OKU ini diberi pembelaan sepatutnya.

Satu sistem menyeluruh harus diperkenalkan untuk terus merujuk anak OKU di hospital/klinik kerajaan ataupun swasta kepada Pegawai Kebajikan Masyarakat berkenaan ataupun pendaftar OKU kementerian, tanpa sebarang karenah birokrasi, ataupun mewujudkan satu sistem berkesan untuk memudahkan pihak kementerian mengenalpasti warga OKU dan menyegerakan pendaftaran mereka agar bantuan serta elaun bulanan dapat disalurkan serta-merta untuk keperluan mereka.

Sistem mudahkan peroleh elaun OKU 

Dalam laman web Bajet 2014, suara-suara hati golongan OKU telah dilontarkan. Rata-ratanya mahukan satu sistem yang mudah bagi mereka memperolehi elaun OKU itu. Secara logiknya, apabila seseorang OKU itu telah didaftarkan secara sah di bawah kementerian dan memiliki kad OKU, elaun berkenaan boleh disalurkan secara terus ke dalam akaun bank mereka secara bulanan.

Ibubapa atau penjaga yang sah boleh mengeluarkan wang itu untuk keperluan anak OKU. Adakah pihak kementerian takut sekiranya wang tersebut disalahgunakan oleh pihak ibubapa atau penjaga dan kebajikan anak-anak OKU ini terabai?
Percayalah, tidak ada ibubapa atau penjaga menganggap anak OKU ini sebagai bebanan dan sanggup mendera atau mencederakan mereka. Dalam kes terpencil situasi ini mungkin berlaku. Antara penyebabnya mungkin masalah kewangan yang dihadapi.

Pihak kementerian sewajarnya melihat keluarga ini secara menyeluruh, dari aspek kesempitan hidup, tekanan perasaan, mental dan fizikal menjaga anak OKU dan sebagainya.

Sebagai professional yang bertanggungjawab membantu kebajikan dan kesihatan anak-anak OKU dan keluarga mereka, saya berharap kesamarataan dapat diberikan kepada semua golongan OKU. Golongan OKU wajar dibela dan pihak kerajaan melalui kementerian perlu memainkan peranan penting dalam hal ini.

Pembelaan golongan OKU adalah sangat luas, bukan setakat dari segi elaun sahaja, malah banyak lagi perkara-perkara lain.


Dr Ezura Madiana Md Monoto
Pensyarah/Pakar Perubatan Keluarga
Pusat Perubatan Universiti Kebangsaan Malaysia
 

Happy World Down Syndrome Day 2014

It's our 2nd year celebrating this event and we had a blast with our friends and families of the Kiwanis Down Syndrome Foundation PJ...

And Iyad got his funky socks too.. ain't that awesome...?

Happy World Down Syndrome Day to all... thank you for your support and prayer...let's spread the awareness on Down syndrome and we deserve equal treatments in all areas...

early intervention program for children with Down Syndrome

it has been a while...we've been busy and that limits my time to blog...i promise i will update you on iyad's development..

but before that, let me share with you an article in  our local newspaper, The News Straits Times, where i was interviewed on the early intervention program for children with Down Syndrome...

http://www.nst.com.my/channels/learning-curve/special-education-early-intervention-is-crucial-1.514606

we were in the Give Back with Baskin Robbins Campaign

We were proud to be selected as one of the families to be featured in the "Give Back with Baskin Robbins Campaign" in October-November 2013.. the aim of this campaign is to help in collecting fund for Kiwanis Down Syndrome Foundation PJ...

The campaign was one of the CSR by Baskin Robbins Malaysia and it is hoped that through this campaign we are able to create the awareness and educate the public on Down Syndrome and how our special needs children should be given an equal chance in life...

Baby Iyad's developmental milestones...

alhamdulillah, it has been a while since i last wrote about baby iyad's developmental milestones...we are very much excited and looking forward to every single new things that he is capable of doing... he cheers up our gloomy days with his cheeky attitudes and funny acts... he is such a determine boy, even though he doesn't like to be pushed when he's not ready, he actually tries very hard to attain a particular skill until he is able to surprise us with his achievement in his developmental milestones..

at slightly over 1 year old, baby iyad surprised us with a moving forward commando crawl...it was not only one or two steps, but he was trying very hard to get on hold to his toys when we purposely put it far in front of him...

now he's quite good at it, alternating it with rolling over and moving forward.... but wait..! there's another surprise....!

at about 14 months, he impressed us with his skill to sit on his own... baby iyad has slightly shorter arms, which is a known feature of children with Down Syndrome...that can make sitting up on their own quite difficult for them because they can't push themselves to sit as easy as their peers who have a proportionate arm span...

so what he did was, he started by crawling backward and rest his bottom on the floor and pushed himself hard to sit up straight!...that was simply amazing...! at times he failed and he fell forward or sideways, but after he successfully sit up straight he would make a satisfaction scream that he's able to that on his own..! i have yet to video this skill...

alhamdulillah, even though he's slightly delayed in his development, we know that he is working hard to do it...we are very proud of his every single achievements... at 14 months, he adores food very much and is still on fully breastfeeding.. alhamdulilillah, i am still given the chance to feed him with my own milk even though the supply is not as great, but it is sufficient for his intake and requirement...

keep it up my dear baby iyad!! you are such an inspiration in our life and we love you dearly with all our heart...

Iyad's '3D2N 5-star hotel stay' at UKMSC (part 2)

we entered the OT room (OT 15), and i put baby iyad on the table..the anaesthetist gassed him down and he was deeply asleep...at that time, we left baby iyad's life to the Almighty Allah, we continued praying that everything will be fine and baby iyad would return to us safe and sound..

the first thing the anaesthetists worked on baby iyad after he was gassed down, was to get an IV line and draw some blood for his thyroid function test...Dr E found a good vein that was able to give some blood into the bottle, but it got bumped so IV line could not be secured...multiple attempts of IV line searches were done while baby iyad was only gassed in the induction phase, not yet put on proper secured airway..

at one time they decided not to find the IV line as it was so difficult, and they proceeded to put baby iyad on laryngeal mask airway (LMA) but baby iyad became tachycardic as his large tongue flopped backwards, and they reinserted the LMA but still his breathing was not good, so they needed to fine an IV access so that they can proceed to intubate him for the airway...finally, i think after about 45 min, an IV access was successfully placed at his left foot...

then the procedures began, starting with checking for his eye fundus, measuring for his cup-disc ratio and eye pressure and checking at the patency of the nasolacrimal duct...up to then, everything was good.. next the refraction test by the optometrist... alhamdulillah, it was ok and appropriate for his age...

the anaesthesia was reversed and baby iyad was wheeled out of the operation theatre to the recovery area...he was breathing on his own, sleeping serenely... i stimulated him and cuddled him so that he would wake up and he opened his eyes and searching for mama's milk...obviously he was hungry for being fasted since 5am in the morning up to then it was 12 noon...i offered him my breast and he tolerating it very well and did not vomit...

we were transferred back to the ward and baby iyad continued asking for more milk and intermittently fell asleep again...

by evening, he was quite active and was able to tolerate his cereal and we offed the IV drip as he was taking his milk and food well...we did not get discharged that day as the ophthalmologist had cases to attend to in the OT and would only review baby iyad the next morning...

so we spent another night in our 5-star hotel and were only discharged at around noon the next day...

although as medical professionals, we've seen many children been through many surgical procedures, and it was only a normal examination for baby iyad, we reserved our fear at the back of our mind... anaesthesia and the whole procedures are not without complications, so the best we could do at that time was pray to the Almighty Allah to look after our precious baby iyad and to return him back to us after it was done...alhamdulillah, everything went well and baby iyad is now actively up and about trying out new things every single day....

Iyad's '3D2N 5-star hotel stay' at UKMSC (part 1)

as planned, baby iyad had to undergo examination under anaesthesia (EUA) to have his eyes properly checked...his eyes pressure was found to be elevated under normal eye examination which could be due to persistent crying, struggling and screaming during the procedure...as increased eye pressure could be one of the signs of glaucoma, which can be found in children with DS, it is important to have baby iyad's eyes checked properly and if it is truly elevated, treatment could be instituted to prevent complications..

we checked-in to the ward and was reviewed by the Ophthalmology MO who is our friend, Dr H...he gave it a try to prick baby iyad's vein to get some blood for routine investigations...as we know, it's going to be challenging for all of us; for the Dr, the assisting nurse and us the parents..and poor baby iyad, he was screaming and struggling during the procedure in which we had to abandon after a few unsuccessful attempts...after a few minutes cuddling in wrap, he finally fell asleep...

the anaesthetist, Dr N came next to review while baby iyad was still asleep...we were instructed to stop breastfeeding 4 hours before the procedure for the anaesthesia and no more food after midnight... hmmm, that could be a challenge for us as baby iyad need to stop breastfeeding at around 5 am, where he usually would wake up and would want to be breastfed at that time...hopefully, Allah will make it easier for us... 

so that night, baby iyad had a good night sleep on the adult hospital bed with mama, while papa slept on the sofa bed... he seemed to enjoy his stay in the ward....

at 5 am, baby iyad had his last breastfeeding session with me before being put on fasting mode for the procedure...it was quite challenging to make him stop nibbling and breastfeeding so dear hubby had to carry him, cuddled him to comfort and brought him around the 7th floor so that he would forget his hungriness... 

at around 8.30 am, we were called to the operation theatre (OT), baby iyad was dressed in the oversized OT gown and cap...he looked so cute in it...especially when the oversized cap kept falling down covering his eyes...

i carried him down to the OT in the ring sling and upon arrival to the OT, dear hubby changed into his OT attire while i carried baby iyad at the entrance...once hubby was ready inside to receive baby iyad, i then changed into my OT attire and rejoiced with them at the receiving bay... while cuddling and carrying iyad, he finally dozed off...