Towards Full Participation of Persons with Disabilities in Singapore Society

Mr Deputy Speaker, Sir, the advancement and full participation of persons with disabilities or PwDs is a matter close to my heart.

I am the parent of an adult with moderate autism. I actively volunteer at and head a couple of disability organisations. I am also a Member of Parliament and Mayor involved in disability support initiatives as one of my duties. I therefore view past, current and future developments in this sector from many perspectives. My feelings are mixed – a mix of joy, a mix of concern and a mix of cautious optimism.

Today, I want to propose five changes that need to happen before persons with disabilities can fully participate in the life of Singapore society. But first, let me touch on the positive developments, thanks to the Singapore Government, in the last 15 years.

The National Council of Social Service or NCSS estimated in 2018 about 11,000 PwDs aged seven to 18 years, another 61,000 PwDs aged 19 to 49 years, and almost 200,000 PwDs aged 50 years and above. This is about a quarter million people with disabilities in Singapore in 2018. Add an average of three immediate family members to each PWD, and there are more than a million persons and families directly impacted by disability in Singapore.

The calls for the inclusion of PwDs in Singapore society are as old as time, especially in 2004, after Prime Minister Lee Hsien Loong's inauguration, that the disability sector became a lot more visible at the national level.

In the last 15 years, much has been achieved. There is much to celebrate.

Singapore became a signatory to the United Nations Convention on the Rights of Persons with Disabilities, which it ratified in 2013. These are big steps toward ensuring the rights for PwDs. What were most significant to me personally were the following milestones: the commissioning of three five-year Enabling Masterplans for the disabled – a blueprint to chart the sector's vision and plans; substantial increase in Government funding of Early Intervention Centres and special schools; the setting up of SG Enable, an agency for the disability community and an Enabling Village, a physical hub to assemble services; the introduction of universal coverage for MediShield Life, a basic health insurance plan which now includes persons with pre-existing conditions; and schemes to incentivise employers to hire PwDs; and, to me, very importantly, the waiver for headcount quota to encourage the hiring of PwDs in the public service.

I am optimistic that positive changes will continue and 4G advocates like Rahayu Mahzam, Cheryl Chan, Ang Wei Neng, Sun Xueling, Darryl David and many others will rise to the occasion and continue to seek the inclusion of PwDs in our society.

Even as we have good reasons to pat ourselves on our backs, we know something is still amiss. One has only to listen to the feedback of one focus group after another of PwDs and their family care-givers and also observe the outcomes in living, learning and working of the PwDs to know that we are not quite there yet.

In community awareness and support, both the Lien Foundation and the NCSS have reported the state of social inclusion and stigma. Sixty-four percent of the public polled were willing to share but not interact with PwDs in public spaces. Many social service offices, family service centres or FSCs, grassroots organisations and community centres are not yet part of the support network of PwDs. This seems to be a general disconnect. Many people still not heard about the Enabling Village or the many awareness programmes and campaigns, that are being conducted over these years.

On care-giver worries, families continue to fret over what will happen to their children upon the demise of the parents – a classic concern. The feelings of helplessness are even more prevalent in families where children have multiple or more severe disabilities.

The needs of family care-givers change over the life cycle, same as for those with disabilities. There appears to be lacking a robust care-giver support model that is more empowering, more family-based and more community-based.

In living, there are challenges in daily living matters. I will name just a few.

Many PwDs are not prepared for independent living as adults. Not many are trained from young to adopt a healthy lifestyle, leading quite a bit to premature chronic illnesses that add to their disabilities.

In health insurance coverage, accounting graduate Wesley Loh recently highlighted the challenges of getting himself covered for life insurance. Wesley was either turned down or offered coverage with a whole load of exclusions because he had declared his diagnosis of autism. He is not alone in being turned down by insurers for insurance applications.

In residential living, adults with disabilities have very few options. The choices that other Singaporeans enjoy are not theirs to have and supported living options are not always available.

In learning, for many special school or SPED students, graduation is not an occasion for joy. Most SPED students stop learning, whether in daily living or at work. The cliff effect phenomenon for SPED students is well known and describes the fall to little or no services for these students after they complete their formal years of school at usually age 18. This could be a syndrome that is due to the way services and budgets are planned and resourced in silos, based on Government Ministries.

Lifelong learning, the holy grail of Singapore's SkillsFuture movement, is a pipe dream for many adults with disabilities, primarily because most SkillsFuture offerings are inaccessible without the needed disability support.

In the world of work, unemployment and under-employment are two big concerns. The employment rate of PwDs is not only substantially lower than their typical peers, they face a limited range of work options. Under-employment continues to be an issue for those who are cognitively able on the spectrum.

Many PwDs are still not ready for work when they leave school and there are still not enough employers who are confident enough to employ and to develop them.

Five recommended changes. Now, the gaps and challenges I highlighted just now are not limited to Singapore and arise basically due to a combination of factors which include perspectives, structures and provisions. I would like to propose five changes to ensure that our PwDs can more fully participate in our society and not be left at its fringe.

One, society's view of persons with disabilities needs to change. One of the young people I serve with in my volunteer work is 31-year-old Dr Sim Zi Lin, a millennial. Zi Lin completed her PhD in a renowned American university before returning to Singapore to work in a special school. Zi Lin used to share how in her overseas study stint, she was often struck by the expectation that it is the duty of the university to provide for the removal of any barriers to participation to learning for undergrads who are disabled. No questions asked. Just do it – expected; even if things were not always perfect.

Zi Lin also shared with me in our work in enabling PwDs how she notices PwDs, her peers, have far fewer choices and pathways in life compared to their typical peers.

I reflected on why this is so. And I believe a lot of it has to do with how society views PwDs.

For many years, the most common views of society towards PwDs are based on two traditional models – the medical model and the charity model. The medical model sees disabled persons primarily as persons who need to be "cured", who need to be made "normal". And the charity model sees disabled people as victims of life, deserving of pity and need charity so that they can survive.

But there is another thinking model that many progressive countries adopt in viewing PwDs – that disability is the consequence of attitudinal, environmental and social barriers and hence, the removal of these barriers would enable PwDs to participate fully in the life of the community.

Sir, how we view PwDs will determine the place and future of PwDs in Singapore society.

The good news is that something is already happening for yet another population – the elderly people of Singapore.

We see fantastic work by MOH and partners in many policies and programmes related to the seniors – active ageing and eldercare. For instance, a growing school of thought that seniors with dementia should be treated respectfully as equal members of society and supported by a surrounding dementia-friendly community.

I watched with marvel the way a home nursing staff apologised and explained to my mother – she is no more around. I marvelled at the steps that this nurse would take, even when my mother, who had full-blown Alzheimer's, could not respond to her at all. Mom was treated with such respect and gentleness.

So, the perspective that even if one were old and ailing, one should still be treated respectfully and not lose the opportunity to make choices, to be developed or to contribute. This new attitude towards ageing Singaporeans is progressive, it is liberating and reflected in corresponding responses in Singapore's community, policy, services and Budget planning – a very good learning example for the younger disabled community.

Sir, when we recognise that PwDs too are equal members in Singapore, then removing barriers so that they can fully participate in society becomes second nature, and not an act of charity or magnanimity. It becomes natural that we adopt universal design or design for all, in policies and practices at the start, whether in designing physical facilities or services. Meaning, independence and dignity for all, abled or disabled.

Two, gaps in provisions for PwDs need to be addressed. Stemming from a perspective that PwDs are part and parcel of our Singapore society, then we need to get down to work and scan through carefully areas where the basics fall short – in healthcare, accessibility, education and especially lifelong learning, public communications, security and safety, housing, transport, jobs and economic security. The gap analysis ought to be undertaken, hopefully before the next Enabling Masterplan.

I will list just a few newer suggestions for consideration to improve living, learning and working outcomes for the PwDs.

In living, let us strengthen public communications through a total strategic plan to ensure that PwDs will receive the same level of information on matters that impact them. We should ensure that there are provisions to make sure that they have security, safety and access to criminal justice. Develop a plan to bring a continuum of sustainable, integrated residential living options with all levels of needed support. Empower them and their care-givers with a more comprehensive support plan. Someone taught me, what we call, "life after death" – planning, developing a "playbook" of planning for life after death of the care-givers to ensure that the PwDs have continuity in life.

In learning, co-develop a bolder lifelong learning solution with PwDs, disability organisations, key industry captains, complete with vision, strategies, outcomes, tracking and reporting mechanism. Set up partnerships so that there is a fully array of accessible SkillsFuture offerings. Resource SG Enable and their service providers, or partners better, to include a newer definition of work in the new economy, continuum of employment models and upskilling PwDs, employers, training providers and job coaches.

Number three, performance and progress need to be reported and readily available. Many people are not aware of the progress of the Enabling Masterplan even if good work is being driven, being done. There ought to be a commitment to public reporting of key agreed deliverables, progress, outcomes, challenges and even calls for participation and for help. There ought to be a study of the most effective ways to ensure that this information reaches out, on an on-going basis, to the people who are affected by this news, progress or updates. People must know what is going on before they know where to get help. Volunteers and help agencies too, they need to know what is going on before they start their pet projects which if they do not know, will lead to an overlaps in services, so that gaps which are critical will not be overlooked.

Four, structure for policy-making and services, the need to drive collaboration and the spirit of SG Together which Deputy Prime Minister Heng spoke so much about. Structure drives behaviours; structure drives outcomes.

The "Many-Helping-Hands" approach has long been adopted for disability services in Singapore. It, of course, has its proponents and detractors. There are some who believe that Government does everything best, must take over everything. Others feel that the users of services, the PwDs themselves or the disability service providers, know what is best. They are on the ground and they believe they should be the ones who lead and implement changes.

I believe the answer is neither here nor there. The answer lies in a blend.

Government alone cannot drive and deliver all the changes we need to reach the vision of full participation of PwDs in our society. Mind you, I have worked with very amazing, very visionary civil servants before. But the role and natural DNA of Government tends to be to "govern" and dare I say, "control", depending on who is in charge at the moment, at that time. And that is how sometimes terms like "bureaucrats" are used, either by civil servants themselves or by their detractors.

In a vision that needs the support of the whole of society, Government's engagement and collaboration with PwDs, their families, disability organisations must be central.

So, I propose a more formal and on-going alliance of sorts where co-visioning, key decisions, future planning are made; so that decisions are not made in silos, depending on which Government agency or Ministry gets the most budget, so that we can avoid the damaging "cliff effects" when one Ministry's work passes on to the next, so that resources can be allocated from a "life-cycle" perspective, knowing that each move made will impact the rest of the whole eco-system.

The truth of the matter is that such visioning amongst such different partners, this kind of alliance, will not be an easy alliance at the start. PwDs, families, political leaders, Government leaders, civil servants, social service agencies, they are all at different levels of awareness, maturity, motivation and competence. But alliance it has to be for this sector especially, for positive change and long-term impact.

Clarification of roles and responsibilities of the "Many-Helping-Hands" has to be made, updated, based on a common desired end in mind and the strengths and attributes of each helping hand. Each one has to take our place, doing our part with both courage and consideration. A structure has to be put right.

And finally, the voice of people disabilities need to be included. People with disabilities are not all the same. They come in a spectrum. They fall on a continuum. Some will have higher support needs, more severe and their family care-givers sometimes become their proxies. Others like the vice-chairmen and members of this year's Purple Parade Committee – it is an inclusive movement: Yip Pin Xiu , Alistair Ong and Eric Chen – they have their own views and they do not need another to represent them.

Eric Chen, in a recent letter to the Forum, urged Singapore to empower PwDs to stand as equals. He cited, "Many of us understand inclusion as a dependent relationship where abled people are responsible for supporting people who are disabled and to integrate them into mainstream." Eric then said that, "PwDs are seen as being unable to contribute meaningfully to determine their own future; and plans are undertaken by abled people on their behalf". He asked for Government to form – and these are his words – to form an "alliance with service providers, including employers, care-givers and disabled people" so that disabled people too can form part of the inclusion blueprint.

Not every PwD will make a good leader. But that goes for the rest of us. We should therefore develop as many leaders as we can identify in the disability community. And we must listen and include the voice of PwDs and their proxies in policy-making and implementation.

In conclusion, Sir, I urge this House to treat PwDs as equal members of our society and to help work towards their full participation in the life of Singapore society.

To do this, I summarise five changes need to happen.

One, society's view of PwDs has to change. Two, gaps in provisions need to be addressed. Three, performance and progress must be no secret – they need to be reported and readily available. Four, the structure for policy-making and services need to drive collaboration and spirit of SG Together. And five, the voice of PwDs need to be included.

Sir, Singapore has embarked on an amazing journey in the last 15 years to uplift the disability community. Some of us are born with disabilities and some of us will become disabled with age. I urge this House and the rest of Singapore to support this call to ensure that all PwDs can fully participate in our society and they can all lead dignified and meaningful lives in our society. [Applause.]