Denise Phua

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Embracing the Special Needs Community

Sir, I will use the term "special needs" with the commonly used term "disabilities" interchangeably in this speech.

Those of us who have been following the development of the special needs landscape in Singapore know that much has been achieved in the last decade.

The first salvo to include those with disabilities was launched by Prime Minister Lee Hsien Loong when he was inaugurated. His inauguration speech set the tone and momentum of things to come.

There were a few breakthroughs. MediShield Life which covers persons with congenital conditions and/or pre-existing conditions; universal base funding on top of means-tested fundings for Early Intervention, and the immense MOE support for Special Education schools. These are some of the positive breakthroughs.

Singaporeans should visit the SG Enable Village to see the dignity and support given to persons with special needs who might be suitable to work.

Today, we have amongst us in Parliament, a respected Nominated Member of Parliament, Ms Chia Yong Yong, a lawyer with peroneal muscular atrophy. I have personally witnessed the quiet commendable efforts made by the Parliament staff to ensure this Chamber and even our restroom facilities are accessible to Yong Yong. Kudos to them.

The third five-year Enabling Masterplan for Persons with Disabilities in our country is now underway. These are exciting times for the special needs community. But they are also alarming times, judging from the fast pace and ways by which technology can disrupt our world.

The directions laid down in Budget 2016 are just as relevant to this special community. We must, as a country, address the community's near-term challenges. And at the same time, the special needs community comprising Persons with Disabilities, their caregivers, the professionals, the VWOs and other agencies must be future-prepared. They must acquire skills mastery in what they do. They must attain innovation capability, and learn to form enlightened partnerships in order to survive and hopefully thrive in the world of the future.

Dream big, dive deep, dare to deal with the difficult. I believe that is the way to go.

Dream Big. Singapore signed and ratified the United Nations Convention on the Rights of Persons with Disabilities in 2012 and 2013 respectively. The Convention advocates the important view that Persons with Disabilities should not be simply objects of charity, medical treatment and social protection. The Convention sees them as full and equal members of society with rights to such important things such as education, healthcare, housing, justice, mobility and safety.

Singapore must dream big and cast the vision of fully embracing the special-needs community, as its rainbow to chase. In every key aspect of life, Persons with Disabilities must be included by default, in the main chapter of policy making and not as an after-thought; or worse, forgotten.

A Smart Nation is not so smart if it creates a digital divide between those who can; and others who cannot or are not included to partake.

The SkillsFuture movement does not promise much of a future if it does not tangibly provide for those at risk of being left behind – the vulnerable including Persons with Disabilities. If lifelong learning is the way to go, then there is nothing to say MOE's special schools cannot be resourced to become lifelong learning hubs so that persons with special needs can learn and contribute for life.

In the special needs sector, we can leverage on our nation's advantage in technology to be the game changer to develop, scale and spread excellence so more can benefit. Go for excellence. Dream big.

Dive deeper. To truly embrace the special needs community, Government and other stakeholders must go beyond the usual general public consultations focused groups in developing policies and programmes, especially for the upcoming Enabling Masterplan.

There are several key disability types – intellectual, physical, developmental, sensory, learning and groups with multiple disabilities. Persons with Disabilities and their caregivers are not all the same in the issues they face. There are different levels of challenges, commitment, abilities and excellence amongst the service providers and agencies supporting them. We need to do more than ground sensing. The usual general frustrations and disappointments will surface but dive deeper we must if we wish to excel. Encourage each major disability group to study their own terrain and derive a mini Enabling Masterplan that highlights the pivotal needs of their charges, prioritise them, identify the gaps and recommend solutions.

Government must invite and study these plans. Not everything can be addressed by Government, we know, but it can surely play the role of Integrator and Facilitator to identify partners who can co-source or co-develop innovative solutions to address this area of growth or pains.

Singapore Association for the Deaf has attempted a mini-Enabling Masterplan highlighting the needs for effective early intervention. Other deaf activists had raised the need to make captioning and sub-titling a default feature for all key national communications.

The adults who are visually impaired need a greater variety of jobs so more of them can find work. More must be done upstream to train them and find jobs beyond the respected traditional professions like masseurs and buskers.

The autism community has organised itself and formed an Autism Network Singapore and is in the process of developing its own Enabling Masterplan. Their worry is also for the adults in their midst.

Administrators and policy writers must themselves dive deeper too. It is old-school to only use a person's ability or inability to perform physical ADLs (Activities of Daily Living) as the eligibility criteria to schemes such as the Foreign Worker Grants for the disabled. Just because someone is able to physically dress himself and go to the toilet independently, does not mean he does not need supervision in other key aspects of life.

To achieve excellence, Government and all of us in the sector need to go beyond threading water and dive deeper.

Lastly, we must dare to deal with the difficult issues confronting the special needs community. There may be no easy solutions for some of these issues and that is precisely the reason why we need to surface them, alert the relevant agencies and tap on the rest of the Singapore family. I would like to highlight a few.

Regular health screening and consultations by doctors, dentists and even optomologists capable of treating Persons with Disabilities. This is a real need. Dr Chen Shiling from the Happee Hearts Movement has a vision of starting a specialised health centre for People with Disabilities (PWDs). Check her out.

Children with rare diseases whose medical costs can chalk up to $300,000 per year. Although MediShield Life, thankfully, does not exclude them, the needs are still high and this group needs help. Centres for adults with more severe disabilities, receiving only means-tested financial support and insufficient for long-term viability. They need the support of the rest of us.

Parents who are in urgent need of legal assistance as they are no longer able to make decisions for their adult children deemed as lacking mental capacity; decisions such as surgeries and housing – they need help. Family care-givers who are emotionally at risk of taking their own lives and those of their children with special needs – they need help.

How can Government and the rest of Singapore support them? We cannot pretend they do not exist. We need to dare to confront these difficult challenges.

Persons with special needs are more than their diagnosis. They are not simply the objects of our charity. Someday, many of us may join this club when we lose our sight, our hearing and our mobility. Some of us may even lose our mental capacity. The only way to predict the future is to help create it.

Let us dream big, dive deep and dare to deal with the difficult.