Letter: Has Celebrating Disability Days Brought Any Benefit to the Disability Community?

Date Published: 8 April 2024

Each year we celebrate a number of disability days, often with the involvement of the Ministry of Women, Family and Community Development (KPWKM), Ministry of Health (MOH) and, at times, the Ministry of Education (MOE). Recently, we observed World Autism Awareness Day (2 April). In March, we celebrated World Down Syndrome Day (21 March). There are also International Day of Persons with Disabilities (3 December), World Cerebral Palsy Day (6 October), Invisible Disabilities Week (17–23 October) and many others. These events will usually have statements made by the relevant ministers, invariably illustrated by photo-ops of the ministers with persons with disabilities and some infographics or images on the respective social media pages of KPWKM, MOH and MOE.

These days and events are critical to focusing the nation’s attention on the lived experiences of persons with diverse disabilities. And, they should continue.

At the same time, we need to ask: what impact have they made on the rights and support services landscape of the disability community? Have they galvanised KPWKM, MOH, MOE and other government agencies to enlarge and improve the national services for persons with disabilities and the disability community?

For voters and tax payers, independent and regular audits of the performance of ministries and all government entities are long overdue. Malaysian voters and tax payers have a right to access the results of independent assessments of the scope and effectiveness of government services, performance and annual/longer-term plans for persons with disabilities. With their care partners, persons with disabilities account for more than 30% of the population. With the rapid ageing of Malaysian society and the ageing-disability intersectionality, we must acknowledge that the 30% will further rise. Yet, the disability community is one of the most poorly served in the nation.

Here are critical questions that KPWKM, MOH and MOE need to answer on plans that each has outlined for the disability community:

• What has happened to the “National Autism Council” whose formation the Ministry of Health announced in July 2022? Does it take two years for its inception? Services for autistic persons are limited, with most services provided outside of government agencies. Autistic persons, and other persons with disabilities, face barriers throughout their life course, from inadequate access to timely diagnosis and support services to the absence of systematic, long-term efforts to reduce stigmatization and discrimination, especially for OKU card holders, thus discouraging many from being formally registered as OKU.

• Could Suruhanjaya Perkhidmatan Awam (SPA) and the Chief Secretary to the Government explain why we have failed, after 35 years (since 1988), to meet a government policy target and promise of 1% civil service jobs for disabled persons? The current rate is 0.3%. Most telling is that the majority of persons with disabilities who attempt to apply for a job via SPA do not even get called for an interview. Discriminatory practices against OKU who have the necessary qualifications extend beyond recruitment to job security and career advancement for the very few OKU in the civil service. Why are such practices silently condoned and perpetuated? Why is there no leadership in ending the injustice of discrimination against qualified OKU in the civil service?

• The Ministry of Women, Family and Community Development has a good “Pelan Tindakan OKU 2016-2022.” Could KPWKM inform the Malaysian people what it has achieved for the 10 Plan strategies, as well as many objectives and targets? After 2022, why is there no follow-up Pelan Tindakan OKU? Without a Pelan Tindakan OKU since 1 January 2023, how does KPWKM allocate resources for OKU?

• The Minister, KPWKM, announced that amendments to the Persons with Disabilities Act, 2008 would be tabled in Parliament in June 2023. Nine months later, we are still waiting for meaningful amendments to harmonise the Act with the Convention on the Rights of Persons with Disabilities (CRPD) that Malaysia ratified in 2010. Noteworthy is the 10th core strategy (under KPWKM’s Pelan Tindakan OKU 2016-2022) to “Implement laws in accordance with the Convention on the Rights of Persons with Disabilities.” Could KPWKM explain what it has done to include and reflect the CRPD in amendments to the Act?

• The Family Health Development Division, Ministry of Health, has a detailed “Health Care for Persons with Disabilities Plan of Action 2011-2020.” It would be good to know what has been achieved. In the case of MOH too, why has the Plan for the disability community stopped without a follow-up Plan and, in this case even earlier, at 2020? Is it customary that a plan or its follow-up takes years to be launched?

• In the case of the development of the National Dementia Plan of Action whose custodian is MOH, the process commenced in 2019, with civil society inputs in 2022 for the revival of the draft Plan and again in March 2024, with no indication to the concerned public when it will be launched.  

• The Ministry of Education has a meaningful “Malaysian Education Blueprint 2013-2025” (MEB) which outlines that “75% of students with special needs should be enrolled in inclusive programmes by 2025.” MOE recently announced that the MEB “achieved success.” And yet, those of us who work with children with disabilities know how limited inclusion into mainstream education still is. It is time to take stock of the real achievements on inclusive education by listening to the ground realities of the disability community.

• Why are the reports of the work undertaken by the National Council for Persons with Disabilities (MBOKU) and its subcommittees not made available on the KPWKM website for easy access by OKU and the entire disability community that includes parents, allies and all concerned with OKU rights?

Celebrating disability days is good for awareness raising, their original purpose, but only if reinforced by comprehensive efforts that yield meaningful change in the lives of persons with disabilities at the household and community levels. Nice speeches, plans and ideas are of no value unless translated into reality on the ground. The disability community is languishing. Children with disabilities are not fulfilling their potential. Adults with disabilities are struggling for equitable inclusion in all aspects of mainstream society. Malaysia is ill-prepared for disability with rapid ageing. This is a system-wide failure that calls for an urgent reality check and corrective actions. The answers to the above questions are a telling measure of the state of societal wellbeing.

By 2056, Malaysia will be a “super-aged society”, with over 20 percent of its population above the age of 65. The World Health Organization (WHO) lists dementia as a leading cause of disability and dependence in older persons 65 years and above. Dementia is an umbrella term for the progressive loss of brain functioning that affects daily living skills, including cognitive, social and physical.

There is no cure for dementia at present. Yet, a medical model that focuses on the condition and treatment drives the dementia response. A shift away from the medical model to a disability rights model is critical to materialise the social care mooted by Khairy.

The disability rights model recognizes that physical and attitudinal barriers in society prevent people from social inclusion and access to services. Removing these barriers paves the way for persons living with dementia and all persons with disabilities and care partners to live a life of dignity and self-determination.

Persons living with dementia can identify and register themselves as disabled under the Persons with Disabilities (PWD) 2008 Act, obtain the disability card and access accommodations provided.

However, many do not wish to do so because once registered in the system, they become devalued and exposed to stigma and possible discriminatory practices and rights violations. Only 611,168 out of an estimated 4.9 million persons with disabilities in Malaysia are registered as of June 2022.

Although Malaysia has ratified the Convention on the Rights of Persons with Disabilities (CRPD), its policies, committees and programmes still fail to protect the rights of all persons with disabilities and care partners. We are far from reaching a just nation for all.

Signatories

Dato’ Dr Amar-Singh HSS
San Yuenwah
Anit Kaur Randhawa
Ng Lai-Thin
The OKU Rights Matter Project

Media Coverage

CodeBlue

FreeMalaysiaToday

TheMalaysianInsight

Ipoh Echo

Says.com

Aliran

Surat: Adakah Sambutan Hari Orang Kurang Upaya Membawa Sebarang Faedah kepada Komuniti Orang Kurang Upaya? 

Setiap tahun kita meraikan beberapa hari ketidakupayaan, selalunya dengan penglibatan Kementerian Pembangunan Wanita, Keluarga dan Masyarakat (KPWKM), Kementerian Kesihatan (KKM) dan, kadang kala, Kementerian Pendidikan (KPM). Baru-baru ini, kita telah menyambut Hari Kesedaran Autisme Sedunia (2 April). Pada bulan Mac, kami menyambut Hari Sindrom Down Sedunia (21 Mac). Juga diraikan adalah Hari Orang Kurang Upaya Sedunia (3 Disember), Hari Palsi Serebrum Sedunia (6 Oktober), Minggu Kurang Upaya Halimunan (Invisible Disabilities Week) (17–23 Oktober) dan banyak lagi. Acara-acara ini biasanya diraikan dengan kenyataan yang dikeluarkan oleh menteri-menteri yang berkaitan, selalu digambarkan oleh gambar-gambar menteri bersama orang kurang upaya (OKU) dan beberapa maklumat grafik atau imej di halaman media sosial KPWKM, KKM dan KPM masing-masing.

Hari-hari dan peristiwa ini adalah penting untuk menumpukan perhatian negara kepada pengalaman hidup OKU yang pelbagai dan perkara ini harus diteruskan.

Pada masa yang sama, kita perlu bertanya: apakah kesan sambutan-sambutan seperti ini terhadap hak dan landskap perkhidmatan sokongan kepada komuniti OKU? Adakah sambutan-sambutan ini telah menggalakkan KPWKM, KKM, KPM dan agensi kerajaan lain untuk meluaskan dan menambah baik perkhidmatan dan sokongan negara untuk OKU dan komuniti OKU?

Bagi pengundi dan pembayar cukai, audit bebas dan berkala terhadap prestasi kementerian dan semua entiti kerajaan sudah lama tertangguh. Pengundi dan pembayar cukai Malaysia mempunyai hak untuk mengakses keputusan penilaian bebas tentang skop dan keberkesanan perkhidmatan kerajaan, prestasi dan rancangan tahunan/jangka panjang untuk OKU. Dengan teman sepenjagaan mereka, OKU merupakan lebih daripada 30% daripada populasi negara. Memandangkan penuaan masyarakat Malaysia secara pesat dan persilangan di antara penuaan dan ketidakupayaan, kita harus mengakui bahawa populasi ini akan melebihi 30%. Namun, komuniti OKU adalah antara golongan yang paling terabai di negara ini.

Berikut adalah soalan kritikal yang perlu dijawab oleh KPWKM, KKM dan KPM mengenai rancangan yang masing-masing telah gariskan untuk komuniti OKU:

• Apakah yang telah terjadi kepada “Majlis Autisme Kebangsaan”, penubuhan yang mana diumumkan oleh Kementerian Kesihatan pada Julai 2022? Adakah tempoh masa dua tahun diperlukan untuk penubuhannya? Perkhidmatan untuk orang autistik adalah terhad, dengan kebanyakan perkhidmatan disediakan di luar agensi kerajaan. Orang autistik, dan golongan OKU lain, menghadapi halangan sepanjang hidup mereka, daripada akses yang tidak mencukupi kepada diagnosis dan perkhidmatan sokongan tepat pada masanya kepada ketiadaan usaha jangka panjang yang sistematik untuk mengurangkan penstigmaan dan diskriminasi, terutamanya bagi pemegang kad OKU. Ini sekali gus menyebabkan ramai tidak berminat untuk berdaftar secara rasmi sebagai OKU.

• Bolehkah Suruhanjaya Perkhidmatan Awam (SPA) dan Ketua Setiausaha Negara menjelaskan mengapa kita gagal, selama 35 tahun (sejak 1988), untuk memenuhi sasaran dan janji dasar kerajaan 1% penjawat awam OKU? Kadar penjawat awam OKU semasa ialah 0.3%. Fakta yang paling ketara ialah majoriti OKU yang memohon pekerjaan melalui SPA tidak dipanggil untuk temu duga. Amalan diskriminasi terhadap OKU yang berkelayakan tidak terhad kepada pengambilan kerja, tetapi juga merangkumi jaminan pekerjaan dan kemajuan kerjaya bagi mereka yang sedang berkhidmat sebagai penjawat awam. Mengapa amalan sebegitu diterima dan diteruskan secara senyap? Mengapa pihak kepimpinan tidak bertindak untuk menamatkan ketidakadilan dan diskriminasi terhadap OKU yang berkelayakan dalam perkhidmatan awam?

• Kementerian Pembangunan Wanita, Keluarga dan Masyarakat mempunyai “Pelan Tindakan OKU 2016-2022” yang baik. Bolehkah KPWKM memaklumkan kepada rakyat Malaysia apa yang telah dicapai untuk rancangan-rancangan bagi 10 Teras Strategik yang ditetapkan, serta pelbagai objektif dan sasaran yang digariskan? Selepas 2022, kenapa tiadanya susulan kepada Pelan Tindakan OKU? Tanpa kewujudan Pelan Tindakan OKU sejak 1 Januari 2023, bagaimanakah KPWKM mengagihkan peruntukan untuk OKU?

• Menteri KPWKM mengumumkan bahawa pindaan kepada Akta Orang Kurang Upaya 2008 (“Akta OKU”) akan dibentangkan di Parlimen pada Jun 2023. Sembilan bulan kemudian, kita masih menunggu pembentangan pindaan yang bermakna untuk menyelaraskan Akta tersebut dengan Konvensyen Mengenai Hak Orang Kurang Upaya (CRPD) yang diratifikasi oleh Malaysia pada 2010. Malah, Teras Strategik 10 di bawah Pelan Tindakan OKU 2016-2022 oleh KPWKM menyatakan: “Melaksanakan undang-undang mengikut Konvensyen Mengenai Hak Orang Kurang Upaya”. Bolehkah KPWKM menjelaskan apa yang telah dilakukan oleh Kementerian untuk memasukkan dan mencerminkan CRPD dalam pindaan Akta OKU?

• Bahagian Pembangunan Kesihatan Keluarga di bawah Kementerian Kesihatan mempunyai “Pelan Tindakan Penjagaan Kesihatan untuk Orang Kurang Upaya 2011-2020” yang terperinci. Adalah sangat penting untuk mengetahui apa yang telah dicapai. Dalam kes KKM juga, mengapakah Pelan untuk komuniti OKU dihentikan tanpa Pelan susulan? Tambahan pula, dalam kes ini, lebih awal lagi pada 2020? Apakah ia kebiasaan untuk mengambil masa bertahun-tahun untuk melancarkan sesuatu pelan atau susulannya?

• Dalam kes pembangunan Pelan Tindakan Demensia Kebangsaan yang dipertanggungjawabkan kepada KKM, proses itu bermula pada 2019. Draf Pelan tersebut dilancarkan semula pada 2022 dengan input masyarakat sivil dan sekali lagi pada Mac 2024, tanpa sebarang petunjuk kepada orang ramai tentang masa pelancaran pelan tersebut.

• Kementerian Pendidikan mempunyai “Pelan Pembangunan Pendidikan Malaysia 2013-2025” (MEB) yang bermakna. Ia menggariskan sasaran untuk “mendapatkan 75% murid berkeperluan khas mendaftar dalam program pendidikan inklusif menjelang 2025.” MOE baru-baru ini mengumumkan bahawa MEB “mencapai kejayaan.” Namun begitu, kami yang bekerja dengan kanak-kanak kurang upaya tahu betapa terhadnya penyertaan murid berkeperluan khas dalam pendidikan arus perdana. Sudah tiba masanya untuk mengambil kira pencapaian sebenar dalam pendidikan inklusif dengan mendengar realiti komuniti OKU.

• Mengapakah laporan kerja-kerja yang dilaksanakan oleh Majlis Kebangsaan Bagi Orang Kurang Upaya (MBOKU) dan jawatankuasa kecilnya tidak dipaparkan di laman web KPWKM untuk memudahkan akses kepada OKU dan seluruh komuniti OKU yang merangkumi ibu bapa, rakan sekutu dan semua yang mengambil berat hak OKU?

Sambutan hari-hari ketidakupayaan adalah amalan yang baik selaras dengan tujuan asalnya, iaitu meningkatkan kesedaran. Akan tetapi, peningkatan kesedaran hanya bermakna jika ia diperkukuh dengan usaha menyeluruh yang menghasilkan perubahan bermakna dalam kehidupan OKU, di peringkat isi rumah dan masyarakat. Ucapan, rancangan dan idea yang bagus tidak bernilai melainkan kesemua ini direalisasikan di kalangan masyarakat. Komuniti OKU semakin terabai. Kanak-kanak kurang upaya masih tidak dapat mencapai potensi penuh mereka. OKU dewasa masih menghadapi cabaran untuk keterangkuman dan penyertaan yang saksama (inklusif secara ekuiti) dalam semua aspek masyarakat arus perdana. Malaysia kurang bersedia untuk menghadapi ketidakupayaan dan penuaan masyarakat yang cepat. Ini adalah kegagalan sistem secara keseluruhan dan memerlukan semakan realiti dan tindakan pembetulan dengan segera. Jawapan-jawapan kepada soalan-soalan yang dibentangkan di atas jelas menggambarkan kesejahteraan masyarakat Malaysia.

Ditandatangani oleh

Dato’ Dr Amar-Singh HSS
San Yuenwah
Anit Kaur Randhawa
Ng Lai-Thin
Projek Penegakan Hak Asasi OKU

Liputan Media

Aliran

Resource

PDF version of the Letter
(English language and Bahasa Malaysia)