Ageing with Purpose

Mr Speaker, Sir, I rise to support the Motion to continue strengthening support for care-givers. Their needs are not insignificant. Many of them require help in navigating where to get help, where to obtain financial and workplace support, empowerment and training services.

Whilst the parliamentary Motion relates mainly to care-givers of seniors, I would like to focus on one unique group of care-givers. These are the care-givers of persons with disabilities (PWDs); mostly parents who are themselves ageing.

These unique care-givers face the double whammy of dealing with (a) their own ageing and (b) the ageing of their children with disabilities.

Pushed to a corner, some parents end up committing filicide or the act of murder of one’s own child. In 2014, it was reported in local news that the mother of a child with special needs threw him out of their HDB flat, causing his death. The mother, his care-giver, had developed major depression and was seized by the thought that the son was the cause of her misery.

Amongst the thousands of care-givers I have met, there are some, however, who are so willing to give of themselves that they put their child’s interests way above their own.

Mdm Tan, not her real name, lives in a rental flat in my estate. She has two severely disabled children in their late 30s whom she serves, lifts, feed throughout the day. The last I saw her at the house visit, she was exhausted and obviously physically challenged due to the heavy lifting that she does each day looking after her adult disabled children.

Another resident of mine, Mr Lim, not his real name, in his 70s, is a single parent looking after his severely autistic son who is also in his 30s. When Mr Lim fell ill and could not care for his son, the son was sent to IMH for a period, causing great grief to Mr Lim who pleaded for his return. Mr Lim felt he could not even afford to fall sick.

Then, there is another group with whom I have had the opportunity to serve. These are parents who are able and willing to not only provide for their own children but also use their professional skills to build services and programmes in VWOs for disabled children of others. Mdm Loh Wai Mooi, a lawyer, and Mr Ho Swee Huat, a financier, and several others who are my volunteer partners in the special needs sector have been offering their legal and financial leadership expertise for years in the sector.

But whoever they are, one common denominator remains. For everyone of these parents I know and every parent I meet at many focus groups, all of them worry over what will happen to themselves and to their adult children when they themselves lose their mental capacity or pass on.

I arrived at the conclusion that breakthroughs for these families can start only if care-givers are assured that their ageing children with disabilities will be taken care of. Hence, the Enabling Masterplan for Persons with Disabilities developed under MSF, although comprehensive and impressive in presentation, is still not known by many in the community. EMP3 must help deliver and communicate better assurances and outcomes for persons with disabilities in early intervention, education, employment, financial security, healthcare and other cross-cutting issues such as end of life planning. Hence, I urge the Ministry to engage, facilitate and communicate regularly to the special needs community the progress of the Masterplan and to fine-tune the plan as developments occur.

With that in place, the adoption of a systems approach to address the needs of this unique group of care-givers of persons with disabilities would be very useful. I hence propose five steps in a systemic approach of identifying, individualising, integrating, implementing and inspecting the support process of this group of care-givers.

Step one – Identify. Sir, unless we know who, where and what the profile of these care-givers are, it is impossible to support at a sustainable level and add value to their lives. The attempt to develop nation-wide databases of persons with disabilities and their care-givers has not been very fruitful due mostly to a lack of resolve and organisation. However, at local neighbourhood levels, it is highly possible to tap on the current services rendered by organisations such as the Silver Generation Office, Social Service Offices and Grassroots Organisations, a local infrastructure, to develop local databases to identify and locate this group of care-givers.

Step two – Individualise Care-giver Support. Every family is different in needs, abilities and fortitude. Some lack skills, money or other resources to effectively plan, and organise the care for their loved ones. Some are positive and caring while others are negative and unconcerned. 

In our attempt to strengthen care-giver support in our country, we must beware the cookie-cutter solutions that do not address the individual family situation. Depending on their abilities, whether in finance or skills, and willingness – abilites and willingness – the needs of these care-givers can occur on a continuum and the level of support should be matched to those needs and their changing nature over time.

Some care-givers are able and willing and what they require are regular updates and menu of services they can tap on. Some care-givers are able but not willing and they will need engagement and coaxing to do their part. Some are willing and not able and will need to be trained and equipped. Others who are neither able nor willing will require other forms of support. Hence, we need to individualise care-giver support.

Step three – Integration or integrator. The need for a systems integrator, although it is a term that is usually used in the commercial sector or computer sector, is also a term that is very useful in the social service sector. The need for assistance integrator to facilitate the case management or equipping others to integrate the various needs and solutions cannot be under-estimated. The recent setting up of the physical SG Enable's Care-giver Space is a good start in engaging and training care-givers of persons with disabilities and providing them with information and advisory services. However, SG Enable (SGE) will need to be resourced much more to outreach to many more, beyond its physical premise, and to play the role of an effective integrator or to train others to be effective integrators to facilitate the systems approach I am advocating. 

Step four – Implement. As society rapidly ages and the demand for healthcare services and care-giving rises, there will never be enough manpower to perform the roles of care-giving and care-giver support. So, we need to develop a much better coordinated web of local community support that includes neighbours, grassroots, social service organisations, corporate and individual volunteers that will support this unique group and their charges much more effectively. 

And the last step is really inspect. The process of care-giver support is an ongoing one and needs and commitment level can change over time, and therefore, tracking and inspection is one of the very key steps to ensure that this systematic and systemic approach of care-giving support is done. 

So, in conclusion, Speaker, Sir, the role of a care-giver is a challenging one with multiple stress points. The role of a care-giver of persons with disabilities is even more so. So, unless we further strengthen and resource this last mile of execution, using a more systemic and systematic approach, care-givers of persons with disabilities are at high risk of giving up and in some cases, become so helpless and hopeless. They would even contemplate killing their own children first before taking their own lives. For a first world country like ours, we must never let this happen. Sir, I strongly support the Motion.