Addressing Challenges Faced by Caregivers of Children with Special Needs

ADJOURNMENT MOTION

The Leader of the House (Ms Grace Fu Hai Yien): Mdm Speaker, I beg to move, "That Parliament do now adjourn."

Question proposed.

Addressing Challenges Faced by Caregivers of Children with Special Needs

5.08 pm

Mr Murali Pillai (Bukit Batok): Mdm Speaker, on previous occasions in this House, passionate speeches on this topic were made by Members, such as Ms Denise Phua and Ms Chia Yong Yong, who had long fought hard for better care for those with special needs, as well as that of their caregivers .

I would not pretend to have the breadth and depth of their knowledge and experience in this arena. I am, nonetheless, driven to speak on this Motion as a result of a confluence of a number of factors, chief of which are as follows.

Immediately after being elected, I received correspondence from Bukit Batok residents who have special needs children. They highlighted their plights to me. I also had the opportunity to hold in-depth discussions with affected family members and representatives from stakeholders involved in the provision of care to special needs children.

The points I make today are primarily based on my observations from these discussions. In my speech, "special needs" is used interchangeably with "mental disability".

On 26 June 2016, I attended the Bukit Batok Swim Meet co-organised by ActiveSG and Bukit Batok Constituency Sports Club at the Bukit Batok Swimming Complex. There I met Mdm Yap, a single parent with her 10-year-old daughter, Amelia. Amelia is a warm and charming girl. She even tried to cheekily plant a kiss on my cheek when I was not looking.

Amelia suffers from Mild Intellectual Disability (MID) and Global Development Delay (GDD). Mdm Yap entered Amelia for two competitive events: the 50-metre freestyle and the 50-metre breaststroke. Amelia has physical coordination issues and did not always listen to instructions. Mdm Yap had to remind her which proper stroke to use and how to end the race, namely, to touch the walls with two hands for breaststroke and one for freestyle. She spends a lot of time and energy to help Amelia compete. In the end, Amelia completed both races successfully. She and her mother received a great reception from the audience who loudly cheered Amelia along. The organisers also decided to give Amelia a medal for her commendable effort. Mdm Yap was encouraged by this gesture.

I am sharing this as a good example of how our community provided the empathy, encouragement and support for both the caregiver and the child with special needs in their endeavours.

This does not appear to be a given, unfortunately. The Lien Foundation survey, results of which were published in the media last week on 4 July 2016, revealed, amongst others, the following results in its poll of the general public and parents of children with special needs: only 28% of those surveyed agreed that Singapore is an inclusive society when it comes to special needs children.

Whilst a great majority of parents surveyed, about 71%, supported inclusive education, only slightly more than half, 58%, will be comfortable with their child attending the same school as a child with special needs. Only 32% of the general public polled believed that typically developing children are comfortable interacting with children of special needs.

Anecdotally, I have heard accounts that support the impression created by the numbers that Singaporeans are generally less comfortable when dealing with mentally disabled persons.

A mother of a mildly autistic child told me that she enrolled her child in a mainstream kindergarten. The child would go to the school in the morning with a full pencil case, only to return home with just a ruler. Apparently, the child's classmates took advantage of her condition and helped themselves to the stationery. I asked the mother whether she had brought this matter up to the attention of teachers. She informed me that the typical response of the teachers – as the kindergarten does not have any allied professionals to help in such situations – would be to recommend that her child be enrolled in a special needs school instead.

Another mother spoke to me about a problem which appeared, at first glance, a simple one to solve but turned out to be rather complex because of the positions taken by the relevant stakeholders. She drops her autistic son at a childcare centre every morning. She arranged for a bus service to have him picked up from the childcare centre at about 11.30 am and sent to a special needs school. She asked the childcare centre to help escort her son into the bus. The centre refused on account that it does not fall within their scope of work. They went on to highlight that the other parents would also ask for the same service if they were to make an exception for her case. The bus service staff also was not able to help and their explanation is understandable because they could not spare anyone else to pick him up because other special needs children in the bus also need tending to.

As a society, we need to address this situation. We must change our attitudes towards special needs persons and their caregivers. We have always prided ourselves as being an inclusive society when it comes to race, language, religion, social classes. Indeed, the caregivers I have spoken to, have uniformly acknowledged that great strides have been taken in the past few years by the Government to enhance the support given to special needs children.

There is absolutely no reason why a line has to be drawn within our society when it comes to treatment of persons with special needs. Gone are the days when people suffering from mental issues are just locked up in lunatic asylums. For the vast majority of our special needs children, we must take care of them within our community and provide them with the opportunities they need to lead fulfilling lives.

I am not convinced though that legislation would be the right response. Rather, I would advocate that we do more to promote better understanding of special needs children and the challenges they face within our community. We could emulate what my Parliamentary colleague, Ms Tin Pei Ling, has been doing in MacPherson. I learnt that she conducted training lessons for her grassroots leaders so that they are better able to identify and deal with persons with mental disabilities. I do believe that by gaining a good understanding of special needs children and their challenges, our fellow Singaporeans and residents would change their attitudes towards special needs children, develop their empathy and provide better support for them and their caregivers.

We should, perhaps, through relevant agencies like Early Childhood Development Agency (ECDA) promote amongst support stakeholders, such as childcare centres, kindergartens and even school bus operators, the implementation of a code of conduct or best practices to encourage them to take the extra step to help caregivers and their special needs children.

Turning specifically to adult children with special needs, Members of this House have highlighted on previous occasions the need to provide more help to adult children with special needs after they turn 18 and graduate from the education system. We have also heard assurances from the Government that it would look at ways and means to enhance the level of support. The support to be provided, I understand, is primarily two-fold: to provide better institutional support and bespoke job opportunities that would fit their circumstances.

I do not propose to repeat what has already been said. I do, however, wish to update the House that the waiting time to get a place in one of the three Day Activity Centres for Autistic Adults stands at two years. This, in my respectful opinion, is too long. The caregivers will have to bear the brunt of the problem and they will be put under tremendous stress and anxiety. Also, the special needs children with moderate to severe forms of disabilities may unlearn what they have learnt in school. This results in a waste of resources.

I further propose that caregivers of adult children with moderate to severe forms of special needs be given the same form of grants and concessions that caregivers of disabled or the elderly or the young enjoy with respect to employment of foreign domestic maids. This will, hopefully, give the caregivers some level of respite.

I would also advocate that the Government look at providing more funding support to encourage the adoption of models that would enhance the employability of adult children with special needs within the Day Activity Centres; for example, in the horticultural or cafeteria arenas. Whilst these models cost more money to run, they may make more sense in the long run as it provides our adult children with a sense of purpose and enable them to contribute to society at the same time.

There may also be an economic basis for this enhanced funding. A study by researchers from the University of California and Old Dominion University published in a seminal article on autism appearing in The Economist on 16 April 2016 reveals that the lifetime cost of supporting an autistic American is much lesser than the opportunity cost, referring to an estimate of the output lost when autistic people are jobless or under-employed or when their caregivers leave their jobs to take care of them. There is no reason to suggest that the situation in Singapore is any different.

In conclusion, I wish to draw attention to a speech that the Prime Minister made in December 2015 towards the end of the SG50 celebrations about the need to build a more inclusive, fair and just society that respects and values all, including the disabled. He quoted the late Mr S Rajaratnam who famously spoke about building "a democracy of deeds" and that "ultimately, it is the quality and character of the individual citizens rather than the blueprints and programmes which decide whether a society is good or bad… a success or failure."

We are dealing with an area which the Government cannot just decree a change in attitude. This must come from within our society. It depends on each individual and each family. Each of us has a part to play in treating the caregivers and their special needs children with empathy, providing them with the welcome, support and encouragement they so rightly deserve.

5.18 pm

The Minister for Social and Family Development (Mr Tan Chuan-Jin): Mdm Speaker, I would like to thank the Member for his feedback and the concerns that have been raised regarding the needs of caregivers and Persons with Disabilities. My Ministry, together with the National Council of Social Service (NCSS) and SG Enable, has been conducting ground consultations as part of our Enabling Masterplan 3 and also other focus groups which we carry out throughout the year to find out more about the needs of Persons with Disabilities and also that of their caregivers. Through these sessions, we have developed a reasonably decent understanding of the concerns and challenges faced by caregivers in providing care for their loved ones, and the feedback provided by Mr Murali is consistent with those inputs. There is a range of other issues that many families are concerned about as well.

I would like to take this opportunity to update the House and members of the public because it is an area that is vitally important for us. While we have made important progress in the past several years, there is still a lot more that we can do. We will continue to improve and expand services to meet the needs of Persons with Disabilities and their caregivers. Certainly, this is a very important focus for my Ministry, especially as we address these issues in the Enabling Masterplan 3.

But I would say this: in order for the Government to be able to move forward, we cannot do it alone. It really requires the whole community to be involved – the VWOs, private organisations and individuals. When we talk about building an inclusive society, it is not just about bringing on board different Singaporeans with different abilities and to help them be included in the rest of society and in what we do. It is about all of us being included in the process of welcoming other Singaporeans on board because, without the effort of all of us, this cannot happen.

Allow me to take the opportunity to provide an overview of the concerns and issues and where we are as a society, and let me cover some of the main themes.

First, the issue of awareness within the community of Persons with Disabilities. Clearly, from the survey done by the Lien Foundation and certainly from the surveys done by MSF as well, it shows that while we have made progress and while many Singaporeans do express concerns about these issues, whether we actually walk-the-talk or not does not always reflect what we say. As we work towards the vision of an inclusive society, community acceptance is essential and public education efforts will play a very important part. I totally agree with the Member – you cannot legislate these things. In fact, when you legislate, sometimes, it may get in the way because it forces people to begin to just follow the letter of the law without changing the spirit of it. A lot of interactions actually come not from the formal interactions but out of day-to-day interactions which you cannot formally legislate. It is about a change in mindset; it is about a change in climate that we need to effect in our society.

Recently, we launched a campaign called the "We are Able" campaign and the "See the True Me" campaign by NCSS. These are essentially aimed at helping to raise awareness about the abilities and contributions of Persons with Disabilities. We do need to create an environment where Persons with Disabilities can live enabled lives. Campaigns play a part but there are also practical actions that can be undertaken, for example, promoting the employment of people with different abilities within the workspace. It goes a very long way in transforming the cultures of the companies. In fact, many of the companies which have embraced this have shared with us that what they have found to have changed is the climate within the companies. When you have fellow Singaporeans with different abilities within your ranks and they go out of the way to accommodate and to adjust what they do, they find that it softens the work culture. I think that is the kind of transformative effect that we hope to see at the workplace, in schools and beyond. And slowly, hopefully, a tipping point can be reached.

A second theme is really about providing support to special needs children in mainstream schools. There are over 20,000 children with special needs attending mainstream MOE schools and these children are supported in various ways. Allied Educators provide learning and behavioural support to students with mild educational needs, such as dyslexia, Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). And all schools have a core group of teachers trained to support students with special needs.

In addition, a number of schools in each cluster are resourced with disabled-friendly facilities and programmes to support students with hearing impairments, visual impairments and physical disabilities.

The third theme is post-18 options for special needs children. What happens when the formal schooling ends? This is something that weighs on the minds of all parents who have special needs children. We are very aware of their concerns regarding the limited options that Persons with Disabilities have after graduating from SPED schools. We are currently studying the opportunities to increase the post-18 range of options.

Efforts are underway to strengthen the transition from SPED schools to work. MOE, MSF and SG Enable have started the School-to-Work (S2W) programme, which involves the schools, employers and parents to provide more work and training options for these students. And to try to further ensure as far as possible information transfer and a seamless transition from home to school, and school to work, and to facilitate that as much as we can.

A fourth theme is about funding for skills training post-SPED. My Ministry has been working with MOE for the Post-Secondary Education Account (PSEA) to be extended to special needs children following their graduation from SPED for skills development and further training to enhance their work capability.

Like all other Singaporeans, Persons with Disabilities will also be able to tap on SkillsFuture when they reach 25 years of age for continuing professional development training to remain relevant in the workforce. For many with special abilities, they can gain new skills and to be relevant in the workforce. I think we are making some progress on that front and I hope that we can extend that as much as possible. For many companies – and certainly for some sectors – we do not know what we do not know. When we actually look at how it is being done elsewhere, sometimes abroad or sometimes in other industries, it surprises employers. "I did not realise that I can do that." And when that realisation happens, that opens a pathway for many other options to be developed.

A fifth theme is about training and employment in general. Employment is an important platform to helping Persons with Disabilities gain independence and SG Enable was set up in 2013 precisely to also promote the employment of Persons with Disabilities. Persons with Disabilities seeking employment assistance and training courses that will help increase their employability can approach SG Enable – and please do so. Persons with Disabilities can benefit from the job-readiness assessment conducted by specialists on job placement and job support. SG Enable actively engages employers and seeks to encourage them to make employment opportunities available for Persons with Disabilities.

Sixth, it is important in terms of care services, especially for caregivers. We are also mindful of the rising number of adults with autism and the need for the services to be expanded to meet the demand. Our Ministry will be expanding the range of home and community care options to meet the needs of the various groups. We are currently on track to add 200 more day care places by 2018 for Day Activity Centres specifically catering to persons with autism. As we expand the capacity of our services, we are also mindful of the quality and capability of staff rendering these services.

MSF will continue to assess the training needs of staff working with Persons with Disabilities and work on the professional development of the staff with relevant training agencies and experts in the field. VWOs also share best practices and knowledge with one another, and also hear from experts from relevant fields of practice at networking platforms organised by MSF and NCSS.

In addition, we are exploring with VWOs to enable day activity centre programming in the community with the help of volunteers meaning that we do not need to have centre activities at the Day Activity Centre itself but that there are other ways in which we can carry that out. A lot of it is providing knowledge, especially to families, because if they feel they are relatively inadequate and the only way to provide some of the support is to send their children to the Day Activity Centres, but they do not realise that there are things that they can do at home or within the community.

These activities will enable the community to support Persons with Disabilities and their families living in their neighbourhood and, in many ways, like an extended family, or an extended Day Activity Centre, if you will. The community at large can certainly play a bigger role in lending their support for such initiatives, firstly, by acceptance and, secondly, to reach out to these groups. This may be a small step for the community but I think it is a very significant step forward in our effort to build an inclusive society. We will continue to press ahead with the expansion of capacity and relevant services so that Persons with Disabilities can be better served.

I agree with Mr Murali in terms of the waiting times, not just for Day Activity Centres, but for various special needs schools and so on. In some cases, the wait is longer than we desire. If I were a parent of a special needs child, and especially where we believe that early intervention will make a difference, it is very anxious – every month that we wait. We wish that, if intervention had come earlier, it would have made that additional amount of difference. We will endeavour to bring those timings down.

In terms of subsidies for care services and transportation, caregivers who are accessing care services, such as Day Activity Centres, Home-based care services and the Drop-in Disability Programme, it is also important for us to support the effort to get there. So, they receive continued support from the Government through means-tested subsidies which can defray up to 80% of their costs. Also, Persons with Disabilities who are accessing educational or care services can tap on dedicated transport. For example, SPED schools are also supported through transport assistance under the VWO Transport Subsidy Scheme. Eligible Persons with Disabilities may receive transport subsidies of up to 80% of their monthly transport fares. In addition, Persons with Disabilities receive 25% concession on fares on public transport.

In terms of schemes and support for caregivers, caregivers are supported through both subsidy schemes to defray the cost of services, as well as through care-giver support centres at VWOs and within SPED schools. Caregivers who require the assistance of foreign domestic workers (FDWs) to care for Persons with Disabilities with their activities of daily living are eligible to pay a lower monthly FDW levy. Families whose monthly per capita income is less than $2,600 are supported through a monthly FDW Grant to offset the cost of a foreign domestic worker. Caregivers can also enhance their care skills with the support of the Caregivers' Training Grant.

The last theme is about supporting Persons with Disabilities beyond the caregivers' lifetime.

Many parents are anxious as to what is going to happen after they have passed on. One of the things I would very much urge parents to do is to also involve the rest of the family. Sometimes, I do notice that parents, rather than wanting to burden the siblings, take on the responsibility themselves. But I think it is important to involve the siblings in the process because when they pass on, it is not always a given that the siblings necessarily will step forward and play their role. This is something that is important.

But beyond that, what can we do to support parents and to assure them? To address this concern, the Special Needs Trust Company (SNTC) was set up in 2008 to provide trust management services for families of Persons with Disabilities. SNTC provides an avenue for caregivers to plan for the long-term financial and care needs of Persons with Disabilities. Along with SNTC, we set up the Special Needs Savings Scheme which was established in 2012 to enable parents to set aside CPF savings for the long-term care of their Children with Disabilities. We will continue to explore avenues to further help address the concerns of caregivers on these matters. So, please do continue to provide us feedback from the families who have concerns on this front.

I would like to conclude by saying credit to those in the sector who have been actively pushing for these issues to improve. While much work has been done to help the caregivers and Persons with Disabilities, very clearly, there is still room for improvement. As we work through the next Enabling Masterplan, we hope to address the various concerns faced by the caregivers of Persons with Disabilities and build on what we have done.

What I have mentioned is but a brief overview of some of the areas that we are currently working on. The Enabling Masterplan aims to examine these issues and we will provide an update when the Enabling Masterplan recommendations are ready.

With the support and partnership of the people, private and public sectors, we can all, together, build a more inclusive society in Singapore in time to come.

Question put, and agreed to.

Resolved, "That Parliament do now adjourn."

Adjourned accordingly at 5.34 pm.