Speaker Sir, the advancement and full participation of Persons with Disabilities (or PWDs) Is a matter close to my heart.

I am a parent of an adult with moderate autism; I actively volunteer at several disability organisations; and I am also a MP and Mayor involved in disability support initiatives.

I therefore view past, current and future developments from many perspectives. My feelings are mixed – a mix of joy, concern and cautious optimism.

Today, I want to propose 5 Changes that need to happen before Persons with Disabilities can fully participate in the life of society.

But first let me touch on the positive developments in the last 15 years.

POSITIVE DEVELOPMENTS.

The National Council of Social Service (or NCSS) estimated in 2018, about 11,000 PWDs aged 7 to 18 years; 61,000 aged 19 to 49 years; and 195,000 PWDs aged 50 years and above. About a quarter million PWDs in Singapore in 2018.

Add an average of 3 immediate family members to each PWD, and there are more than 1 million persons directly impacted by disability in Singapore.

Calls for the inclusion of PWDs in Singapore society are as old as time. It was in 2004, after PM 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’s 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 equal rights for PWDs.

What were most significant to me personally were the following milestones:

• The commissioning and publication of three 5-year Enabling Masterplans for the Disabled, a blueprint to chart the sector’s vision and plans;

• The 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 disability initiatives;

• The introduction of universal coverage for MediShield Life, a basic health insurance plan which now includes persons with pre-existing conditions;

• Schemes to incentivize employers to hire PWDs such as the Special Employment Credit;

• The waiver for public service agencies from their normal headcount quota to encourage the hiring of PWDs in the public services

I am optimistic that positive changes will continue; and 4G advocates like my parliamentary colleagues Rahayu Mahzam, Cheryl Chan, Ang Wei Neng, Sun Xue Ling and many others, will rise to the occasion and continue to seek inclusion of PWDs in our society.

OBSERVATIONS

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 family caregivers; and also observe the outcomes in living, learning and working of the PWDs.

COMMUNITY AWARENESS AND SUPPORT

• Both Lien Foundation and the National Council of Social Services (NCSS) reported the state of social inclusion and stigma. 64% of the public polled were willing to share but not interact with PWDs in public spaces.

• Many social service offices, family service centres, grassroots organisations and community centres, are not part of the support network of PWDs. There is a general disconnect.

• Many people still not heard about the Enabling Village or the many awareness ‘campaigns’, whether they are by NVPC, SGEnable, NCSS or the SSAs.

CAREGIVER WORRIES

• Families continue to fret over what will happen to their children upon the demise of parents – a classic concern.

• The feelings of helplessness are even more prevalent in families whose children have multiple disabilities or are more severe.

• The needs of family caregivers change over the life cycle, similar to that of PWDs. There appears to be lacking, a robust caregiver support model that is more empowering, family-based and community-based.

LIVING

There are challenges in daily living matters. I will name a few.

• Many PWDs are not prepared for independent living as adults.

• Not many are trained from young to adopt a healthy lifestyle, leading to premature chronic illnesses that add to their disabilities. There are few clinical and dental service providers trained in basic disability.

• 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 coverages with a whole range of exclusions by insurers 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 few options. The choices that other Singaporeans enjoy are not theirs to have and supported living options are not always available.

LEARNINGS

• For many special school or SPED students, graduation is not an occasion for joy. Post-SPED school options are limited. Most SPED students stop learning, whether in daily living or for work.

• The ‘cliff effect’ phenomenon for SPED students is well known – and describes the fall to little or no services for SPED students after they complete their formal years of school at usually age 18. A syndrome that could be due to the way services and budget are planned and resourced in silo 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 in-accessible without the needed disability learning support.

WORKING

• In the world of work, unemployment and under-employment are 2 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 cognitively able adults on the spectrum who have lower support needs.

• Many PWDs are still not work-ready when they leave school and require a longer runway to cover what they need to learn. There are still not enough employers who are confident enough to employ and develop them.

5 RECOMMENDED CHANGES

The gaps and challenges I highlighted are not limited to Singapore and arise due to a combination of factors which include perspectives, structures and provisions.

I would like to propose 5 changes to ensure PWDs can more fully participate in our society, and not be left at its fringe.

ONE, SOCIETY’S VIEW OF PWDs NEED TO CHANGE

One of the young people I serve with in my volunteer work is 31-year-old, Dr Sim Zi Lin, a millenial. Zi Lin completed her PhD in a renowned American University before returning to Singapore to work in a special school.

Zi Ling 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 and learning for undergrads who are disabled. No questions asked. Just do it; even if things were not perfect.

Zi Ling also shared with me in our work in enabling PWDs, how she notices PWDs have far less choices and pathways in life, compared to their other 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 2 traditional models – the Medical Model and the Charity Model.

The Medical Model sees disabled persons primarily as persons who need to be ‘cured’ or 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 People with Disabilities – that disability is a 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 this 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 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 about the steps she would take even when my mother, who had full-blown Alzheimer’s, could not respond to her at all.

The perspective that even if one were old and ailing, one should still be treated respectfully, and not lose the opportunity to make choices, develop and contribute.

This new attitude towards ageing Singaporeans is progressive and liberating and reflected in corresponding responses in Singapore’s community, policy, services and budget responses. A good learning example for the younger disabled community.

When we recognize that PWDs too are equal members in Singapore, then removing barriers so that they can fully participate in society level, 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 in services. Meaning, independence and dignity for all.

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 in living, learning and working.

Living

• Strengthen Public Communications through a total strategic plan to ensure PWDs receive the same level of information on matters that impact them;

• Ensure provisions to ensure security, safety and access to criminal justice for PWDs;

• Develop a plan to bring a continuum of sustainable, integrated Residential Living options for PwDs with all levels of support needs;

• Empower PWDs and their caregivers with a more comprehensive support plan; and especially develop a ‘playbook’ of planning for Life after the Death of caregivers to ensure continuity in their QOL;

Learning

• Co-develop a bolder Lifelong Learning solution plan with PWDs, disability organisations, key Industry leaders; complete with vision, key strategies, outcomes, tracking and reporting mechanism

• Set up partnerships between key disability organisations, industry leaders and SSG for a fuller array of accessible SkillsFuture offerings;

Working

• Resource SG-Enable and partners appropriately to include a new definition of work in the new economy, a continuum of employment models and the needed upskilling of PWDs, employers, training providers and job coaches;

THREE, PERFORMANCE AND PROGRESS NEED TO BE REPORTED AND READILY AVAILABLE.

Many Singaporeans are not aware of the Enabling Masterplan , or the good work done.

There ought to be a commitment to public reporting of key agreed deliverables, progress, outcomes, challenges and even calls for participation and help.

There ought to be a study of the most effective ways to ensure this information reaches out on an ongoing basis to PWDs, families, the rest of the disability community and the public.

People must know what is going on before they know where to get help. Volunteers and agencies - before they start their pet projects lest they lead to overlaps in services;

so that gaps which are critical will not be over-looked.

FOUR, STRUCTURE FOR POLICY MAKING AND SERVICES NEED TO DRIVE COLLABORATION AND SPIRIT OF SG-TOGETHER .

Structure drives behaviours. Structure drives outcomes.

The “Many-Helping-Hands” approach has long been adopted towards disability services in Singapore and has its proponents and detractors.

There are some who believe that Government must take over everything. Others feel that the users of services alone, the PWDs, or the service agencies on the ground , know what is best and believe they should be the ones who lead and implement changes.

I believe the answer lies in a blend. Neither this nor that.

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 amazing and visionary civil servants.

But the role and natural DNA of Government is to ‘govern’ and dare I say, ‘control’, depending on who is in charge. 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.

I propose a more formal and ongoing Alliance of sorts where co-visioning, key decisions, future planning are made;

• so that plans are not made in silos, depending on which government agency 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 alliances of this nature will not be an easy at the start.

PWDs, families, political leaders, government leaders, civil servants, social service agencies are all at different levels of awareness, maturity, motivation and competence.

But alliance, it has to be for the disability sector, for positive change and long term impact.

Clarification of roles and responsibilities of the Many Helping Hands has to be made, based on a common end in mind and the strengths and attributes of each hand.

Each one of us has to take our place, doing our part with both courage and consideration.

A Structure has to be put right.

FIVE, VOICE OF PEOPLE WITH DISABILITIES NEED TO BE INCLUDED

People with disabilities are not all the same.

Some have higher support needs and their family caregivers sometimes become their proxies.

Others like the vice chairmen and members of this year’s Purple Parade Committee – Yip Pin Xiu , Alistair Ong and Eric Chen have their own views and do not need another to represent them.

Eric Chen, in a recent letter, urged Singapore to empower PWDs to stand as equals. He cited that ‘many of us understand inclusion as a dependent relationship where abled people are responsible for supporting PWDs and integrating them into mainstream society’. And that ‘PWDs are seen as being unable to contribute meaningfully to determine their future; and plans are undertaken by abled people on their behalf’. He asked for Government to form an ‘alliance with service providers (including employers), caregivers and disabled people’ so that PWDs too can form part of the inclusion blueprint.

Not every PWD will make a good leader. That goes for the rest of us. We should 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.

CONCLUSION.

In conclusion, Sir, I urge this House to treat People with Disabilities as equal members of society and work towards their Full Participation in the life of Singapore society.

To do this, 5 Changes need to happen:

1. Society’s View of PWDs has to change.

2. Gaps in Provisions need to be addressed.

3. Performance and Progress need to be reported and readily available.

4. Structure for Policy making and Services need to drive collaboration and spirit of SG-Together.

5. The Voice of People with Disabilities need to be included.

Sir, Singapore has embarked on an amazing journey 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 People with Disabilities can fully participate in and lead dignified and meaningful lives in our society.