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.
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.
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Difficult as all these stages are, the fifth stage is the hardest to face, especially for families of people with disabilities with high support needs who require life-long care.
Outcomes for people with disabilities 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. Yet others require sheltered employment and assisted living.
Finally, some require life-long support for everyday daily living tasks.
These last two groups of people with disabilities are the ones who 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 people with disabilities 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 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 people with disabilities due to variable quality and a lack of understanding of their needs
- Group homes– Some families are working with civil society groups to set up group homes with trust funds and dedicated carers. These initiatives aim to create a more supportive living environment for people with disabilities with high support needs
Better options for independent and assisted living
Ideally, people with disabilities should be able to live independently in their own homes or apartments 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 and vacation.
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, people with disabilities 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.
Government and community help
What do adults with disabilities with high support needs and their families need from the government?
While many countries have developed government-mandated services that routinely support all people with disabilities, 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 Department for Welfare 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 people with disabilities 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 people with disabilities can live with dignity and autonomy
- Assistance for independent living – People with disabilities 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 people with disabilities 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 people with disabilities 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 people with disabilities can move freely and participate fully in society
- Comprehensive community support services – Accessible community facilities, disability-inclusive healthcare services, affordable assistive devices and equipment, financial aid, disability-inclusive community events and many more – all these go a long way to alleviate the weight of care and create a more inclusive society where people with disabilities lead meaningful lives with dignity
- Inclusive financial services – Banking and financial services must be made fully accessible, catering to the diverse needs of people with disabilities, 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 people with disabilities 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 healthcare coverage, supported or shared decision-making frameworks and lasting power of attorney
Need for systemic change
Many of these initiatives need to be mandated through ensuring that support for people with disabilities 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 people with disabilities from the perspective of a rights-based model of disability and disability-inclusion. No longer an us-versus-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 people with disabilities, 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 people with disabilities 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 people with disabilities. 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
Signatories:
- Dato’ 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 Ien
- 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
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- Ravin Kumar Danapal
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