One major concern for parents of children with disabilities is the uncertainty of their child’s future after their death, particularly for those with high support needs.
In Malaysia, there is a growing awareness of this issue, but national support mechanisms are still lacking, placing much responsibility on parents, family support networks, and civil society organisations (CSOs).
Children with disabilities typically navigate five key stages in life, each presenting unique challenges.
The first stage involves parents recognising developmental concerns and seeking diagnosis and therapeutic support.
The second stage occurs during preschool, for development of school readiness and communication skills.
The third stage involves formal schooling, ideally in an inclusive environment where the child learns together with peers.
The fourth stage presents the challenging transition to university, vocational training, or employment training.
Difficult as all these stages are, the fifth stage is the hardest to face, especially for families of persons with disabilities (PwDs) with high support needs who require life-long care.
Outcomes for PwDs vary widely. Some gain functional skills with ongoing training and therapy, achieving full inclusion into society.
Others may acquire the ability for independent living and be fully employed in the marketplace but struggle to attain a meaningful social and community life. Y
et others require sheltered employment and assisted living.
Finally, some require life-long support for everyday daily living tasks.
These last two groups of PwDs are the ones that need the most support. They keep their parents awake at night wondering and asking themselves repeatedly: “What will happen to my child when I am gone?”
Painful Question With No Easy Answers
There are no easy answers to this painful question. Government, private and NGO-run facilities for long-term residential care of PWDs who require life-long support are few and often limited in quality.
Not all parents have the financial resources to secure their child’s future. Not all families have relatives willing or able to shoulder this responsibility when parents die.
While it is necessary for parents and families to plan ahead to ensure their child’s needs and wishes are met, they cannot do this alone. A strong support system — both from the community and the government — is essential.
For many families, preparing for the future of a disabled child is not only overwhelming but deeply emotional, made even harder by the uncertainty of available resources and care.
Current Options For Families
Family Caregiving: Often, siblings or relatives take on the caregiving role. However, this should be a voluntary choice supported by community resources, therapists, social workers, NGOs, and government financial aid.
Residential Care Facilities: Although an option, they are often not ideal. Private facilities are costly and may lack proper maintenance, while government-run facilities, such as the Taman Sinar Harapan institutions, often face suboptimal conditions.
Some families resort to senior care homes for long-term care, though these are not suitable for PwDs due to variable quality and a lack of understanding of their needs.
Group Homes: Some families are working with CSOs to set up group homes with trust funds and dedicated carers. These initiatives aim to create a more supportive living environment for PwDs with high support needs.
Better Options For Independent And Assisted Living
- Ideally, a PWD should be able to live independently in their own home/apartment without major support. This is most feasible for those with low to moderate support needs.
- Some may live independently but require occasional assistance from care partners or personal assistants – whether government-paid professionals or family members – to assist with specific tasks such as household chores, banking, grocery shopping, vacation, etc.
- Others may choose to live at home, initially with parents and later with siblings or their extended family. Those with financial means may also hire a part-time or live-in personal assistant for additional support.
- When the above options are not available, a PWD may live in a group home, ideally with access to a care partner or personal assistant.
Note that assisted living implies maintaining a home setting with as much independence as possible while providing necessary support for some activities of daily living, as well as medical care and financial transactions when needed.
What Do Adult PWDs With High Support Needs And Their Families Need From The Government?
While many countries have developed government-mandated services that routinely support all PwDs, Malaysia seriously lags behind its neighbours.
For far too long, much of the responsibility of long-term care has fallen on the shoulders of parents, families and NGOs.
It is time that both the community and the government take shared responsibility. Relying solely on the understaffed Welfare Department is not a sustainable solution. What is required is a series of strong initiatives:
Accessible Infrastructure and Assisted Living Facilities: Malaysia needs to invest in extensive infrastructure and assisted living facilities built with universal design principles.
More importantly, we need to generate right-hearted persons as care partners – people who provide consistent, dignified support to PWDs with high support needs in long-term assisted living facilities.
We must avoid creating institutions but instead develop caring communities and assisted living facilities where PwDs can live with dignity and autonomy.
Assistance for Independent Living: PwDs capable of working, whether in open employment jobs (part-time or full-time) or sheltered employment, require support from care partners or personal assistants for independent living.
Having support with activities of daily living ensures their wellbeing and ability to perform in their jobs. This not only enhances financial independence for PwDs but also alleviates the economic strain on their families.
Affordable and Ethical Assisted Living Services: The government must exponentially increase the availability of professional, ethical and affordable personal assistant and assisted living services that are state-funded for PwDs and their family care partners.
Accessible and Affordable Housing: Independent living must be supported through affordable and accessible housing options.
These housing developments should be well-integrated with accessible public transport systems, pedestrian-friendly walkways, and community spaces, ensuring that PwDs can move freely and participate fully in society.
Comprehensive Community Support Services: Accessible community facilities, disability-inclusive health care services, affordable assistive devices and equipment, financial aid, disability-inclusive community events, and many more – all goes a long way to alleviate the weight of care and create a more inclusive society where PwDs lead meaningful lives with dignity.
Inclusive Financial Services: Banking and financial services must be made fully accessible, catering to the diverse needs of PwDs, so that they have greater financial autonomy.
This includes adjustments for individuals with differences in physical movements, information processing and communication abilities.
Autonomy and Supported Decision-Making: Legal provisions should ensure that PwDs have greater control and autonomy over their lives, especially persons with intellectual, cognitive and psychosocial disabilities.
This includes the implementation of state-operated trust-funds with health care coverage, supported or shared decision-making frameworks and lasting power of attorney (LPA).
The Need For Systemic Change
Much of these initiatives needs to be mandated through ensuring that support for PwDs and their care partners becomes a routine governmental responsibility rather than an afterthought.
More importantly, society as a whole must unlearn and relearn what they know about disability and persons with disabilities from the perspective of a rights-based model of disability and disability-inclusion.
No longer an ‘us-and-them’ attitude that perpetuates social exclusion, but a wholesome community that embraces and enhances all diversity in society.
In our endeavour to create meaningful change in the long-term outcomes of PwDs, we must always prioritise their choices and autonomy.
As far as possible we should enable them to decide how they want to live their lives. We should respect the rights, dignity and personal decisions of PwDs while ensuring their full integration into the community.
As parents, our biggest wish before we leave this world is to know that our children have a secure future where their long-term needs are met.
We hope the government will wake-up to this urgent need that affects a large segment of the population, and implement the long-overdue legislation and services necessary to support PwDs. As parents of children with disabilities, we want to die in peace.
Signed by 161 Parents and Professionals of the National Family Support Group for Children and People with Special Needs, Malaysia:
- Dr Amar-Singh HSS
- Ng Lai-Thin
- Alvin Teoh
- Dr Renuka Saseedharan Nambiar
- Ong Hui Yi
- Vincent Quek Ser Seng
- Kwan Wei Yen
- Theow Chiew How
- Evelyn Lim
- Teo Chai Hoon
- Edmund Lim
- Tham Cheng Teng
- Yvonne Ser
- Assoc Prof Dr Madiana Md Monoto
- Khor Sock Kun
- Kok Huey Huey
- Heng Giak Hong
- Dr Wong Wei Leng
- Lee Yoong Sze
- Yee Kok Kaye
- Lee Mooi See
- Damian Wong
- Padmanathan
- Goh Bee Hiang
- Suzie Anak Christopher Ribut
- Xharene Ong Siao Len
- Moong Lee Peng
- Malathi Ratha Krishnan
- Dr Wong Woan Yiing
- Sarah Alia Mohamed Ghazali
- Audrey Hii Wei Kuan
- Teh Guih Poo
- Lim Seok Binn
- Teoh Guat Sim
- Irene Chee Soo Lee
- Ong Sheau Chi
- Puvanendren M Maniam
- Melanie Oh Yeok Mei
- Dr Choy Sook Kuen
- Shasikaala Letchimanan
- Tan Li-Ling
- Annam Balasundram
- Loo Lean Tin
- Tee Geok San
- Bernard Lau Sie Ming
- Tracy Tai Chooi Wah
- Carrie Geraldine Aralis
- Tee Ka Hock
- Shirley Koay Phaik Gaik
- Usharani Perisamy
- Chan Wai Ting
- Loke Siew Phaik
- Beh Joo Ann
- Hwu Shiau Fui
- Ng Kok Ping
- Jayagauri Morthi
- Nur Faizura Ahmad Nazri
- Leong Ping Chian
- Syaffiq Azwan
- Koay Saw Khim
- Nithya Raman
- Choy Wai Loon
- Ivy Peik
- Ong Swee Tin
- Lee Gaik Ngoh
- Veronica Bija anak Abell
- Yip Wan Teng
- Chew Yoke Choo
- Lo Soo Tow
- Kuria Dip Silas
- Desiree Kaur
- Ng Pui Nyinn
- Leong Diyao
- Tung Peh Sim
- Lucyantie Mazalan
- Bernard Hiew Choong Yoong
- Janice Tan JC
- Seow Siew Lee
- Tan Chin Yeow
- Khoh Lee See
- Ravin Kumar Danapal
- Yeoh Kim Suan
- Lim Fernn Nee
- Chan Kam Fong
- Joyce Lim Yee Lin
- Wong Hieng Eng
- Tok Swei Ing
- Cheang Chua Rue Feryn
- Beh Sze Hoong
- Chan Cheah Eing
- Kiranjeet Kaur
- Dr Low Zhen Ying
- Annie Chong Vern Ya
- Rhyme Chang Lin Soon
- Stella Chia Siew Chin
- Phuan Siew Wan
- Joanne Yeoh Lee Peng
- Toh Ting Jii
- Tan Shih Leng
- Harjit Kaur
- Tan Lea Kuan
- Violet Chan
- Lim Bee Ann
- Masturi Mahmud
- Yammy Ang
- Joan Heng
- Tan Yen Sing
- Shyielathy Arumugam
- Gary Tan Giap Kheng
- Lye Kim Thye
- Nurusyifaa’ Hasnan
- Angeline Choo
- Andrea Lai Sook Ching
- Catherine Kang Kee Leng
- Ng Lee Yee
- Komala Thiruvanackan
- Reeza Lim
- Eugene Cheong
- Jo-Anne de Vries
- Yee Yeaw Khim
- Rahmatulhuda Khalidi
- Colin Andrew Krishnan
- Wong Sze Meng
- Fahda Nur
- Dr Raveendran Ramachandran
- Dr Padmini Shanmuganathan
- Irene Yu Chai Ling
- Rafidah Rafizah Ahmad
- Lee Meng-Li
- Koh Lee Kiaw
- Nur Izzati binti Ismail
- Anna Florence Thevasigamoney
- Lim Hui San
- Edward Fredericks
- Ng Yoke Eng
- Leong Tean Yee (Candy)
- Lee Choi Peng
- Leong Tuck Fook
- Siew Ching Hooi
- Dr Ng Sui Yin
- Seng Suan Poh
- Ng Siok L
- Chong Jia Jien
- Ong Sheau Hun
- Ng Chi Ying
- Annie Yew Chee Fen
- Lim Seok Binn
- Teoh Chai Ling
- Eileen Teoh Yen Ling
- Tan Joo Nee
- Gonk Yen Ching
- Lee Pei Ling
- Arnie Ryzianna Zohari
- Ganamandy Isaac
- Chng Cheng Hui
- Cindy Yap
- Loo Kooi Suan
- Ruth Lim Gaik Yean
- Daniel Wong
- Felicia Cheng
- Too Kwai Yok
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