Picture this;

A young woman called Sara, a lone child to a couple of construction workers, left formal education at the age of 21 and found a job at a local factory. The reason being, her parents were getting older and could no longer keep up with the intensity of work required to sustain the family’s household expenses, let alone her further and higher education.

She was a good worker, and was duely promoted to supervisor, and subsequently senior supervisor, with a comfortable monthly income of RM2700. The mother whose diabetes had gotten increasingly debilitating due to an infected sore on her left foot could finally quit work at 50; it was only a matter of time anyway.

The father was still able to work for a few more years, but she feels confident in being able to rise further in her workplace if she continued on her current career trajectory. As the squatter land on which their house is built was mooted to be acquired by a developer for development, they decided to purchase a low cost house; again, it was only a matter of time before that choice became a compulsion.

One day two years ago, she got a phone call informing her of her father’s passing from a traffic accident on his way home from work. Apart from the agonising emotional turmoil, she also had to face the harsh reality of being the sole earner of their household, and also the emotional rock to the physically and emotionally fast deteriorating mother. Things couldn’t get much worse; or so she thought.

A few months after the father’s burial, she received a phone call from the mother in fits of agony, and returned home to find that she had sustained a compound fracture on her right leg. Further complications prevailed due to diabetes, and the leg had to be amputated from the knee down. The infected sore also worsened, and now has to be medically treated by a professional every single day. After a series of absenteeism as a result of having to provide care and transportation to the mother, she had to get a new job despite being lower paid.

All efforts in applying for welfare benefits from the welfare department have been to no avail, citing that she lives together with her mother, is young and abled enough to get a job, and indeed earns a gross wage of RM100 above minimum wage, therefore neither her mother nor she qualifies for assistance. Indeed, according to the current Welfare department’s guidelines, this family does not qualify for any assistance.

Today, the mother has tumours, albeit not cancerous yet painful, growing in both her breasts, and is now 70% blinded in her left eye and 100% blind on her right. Sara, now 27 is still working in the same job at the same pay, with no prospects of a better career, let alone a payrise.

The truth of the matter is this; making ends meet is a daily challenge what with the rising costs of living, and a heavily burdening mortgage that was committed before disaster struck. This is the story and a young woman with the weight of a very dark world on her shoulders, and there is seemingly no real way out of this vicious cycle of misery, heartache, and lost time and opportunity. All because of a sudden turn of events, her career went in flames and became  a ‘carer’ by necessity, not by choice.

Extraordinary story, overwhelmingly common plight

Some may think this is a very extreme story of a series of very unlikely circumstance; think again. Other than her name, this is a genuine case, and not only that, this is but one permutation out of many, of how huge numbers of able bodied Malaysians are trapped by being a carer to a loved one. All this is at the expense of their own career prospects, with little to no way out; worst still, getting no help at all whilst being told that they should get a better job.

As frontliners, in what I once touted as the ‘public service industry’, we legislators are often the first level of ‘social services’ to the uninformed or poorly educated members of society. Other than some private donors, and some charities, who often focuses on providing help to the ‘caree’ (the patient or victim requiring care), there is little to no help available for the carer within the current system.

The picture afore us highlights not just a heartwrenching story, but also illustrates the total negligence by existing policy makers, towards the role played by carers. The challenges they face as a result of them being denied the bare necessity of being acknowledged by the system is deeply worrying. This is before we even touch on their legal protection against being discriminated in a work place, as a result of their often jarring, new found commitments as a carer.

The question is, what do we do to address the plight of families, and the carer(s) that is painted by the afore-described picture? An institutionalised welfare provision of financial aid must be made available; or as other nations who has it, a Carers’ Aid.

One tragedy, one incapacitated, many victimised

To initiate the implementation aid for carers through a carers’ aid, first we need to affect a change of mindset; that a tragic accident, a damning diagnosis, or an indefinitely complicated prognosis does not the only affect the victim and/or patient. More often than not, especially from a financial standpoint, the circumstances of all adult members of the immediate family are turned upside down.

The more significant a financial contributor the caree was prior to incapacitation; the less the number of working adults within the family is; the bigger the impact and burden on each individual family member. This could be used as the basis for decision making, on whether an individual qualifies as a carer.

Other than obvious financial ones, the challenges faced by carers take many forms. Many carers juggle their caring responsibilities with work, study and other family commitments. Some carers do so in isolation and secrecy, because of fear of separation, guilt, pride or other reasons. Carees also vary in age, disability and relationship to their carer, with anecdotal evidence showing that most carees being their parents or their spouse. It is also suggested that most carees suffer from some kind of physical disability, some suffering from both a physical and mental disability.

This means that the sort of roles and responsibilities that carers have to provide varies hugely. They can range from help with everyday tasks such as getting out of bed, personal care such as bathing or even providing  (or transporting the caree to receive)light medical procedures, to emotional support such as helping someone cope with the symptoms of a mental illness. As a result of this, carers are often sufferers of depression or some degree of mental and physical stress.

The most effective way of reaching out to this constituency, is through an outreach mechanism derived from reaching out to existing qualified carees to gauge numbers of qualified carers; incapacitated individuals with negatively uncertain prognosis, who were previously main breadwinner of their family who has more than two dependants.  The welfare department may also offer a one off windfall aid to qualified carers to attract applications of the ‘carer’ status; thereafter, budgetary allocation for carers within the welfare system can be institutionalised, and maybe even legislation can be drawn up to protect the interests and welfare of carers.

Clear definitions for carers and carees

In order for a holistic welfare provision that encompasses carers as well as carees, a comprehensive definition and registration mechanism must be the key. The UK government, who has a well oiled welfare machinery that caters for carers, defines carers as and individual who;

  • Is 16 or over
  • spends at least 35 hours a week caring for someone
  • is not in full time education or studying for more than 21 hours a week
  • earns less than £102 (RM535 at time of publication) a week (after taxes, care costs while you’re at work and 50% of what you pay into your pension)

Correspondingly, the basic definition for a caree is as an individual who;

  • Is aged 16 to 64
  • has a physical disability (including sensory disability, eg blindness), a mental disability (including learning difficulties), or both
  • has a disability that is severe enough to need help caring for his/herself or someone to supervise, for his/her or someone else’s safety
  • has a long-term health condition or disabilityand difficulties with activities related to ‘daily living’ and or mobility

As the Malaysian GDP and public revenue is far from ample, debt ridden, and moreover its administration lack transparency, it would be unreasonable to expect the implementation of a direct copy from the well evolved carers’ allowance offered by the UK government. However, the concept and framework behind it can, and must be at least considered by the State government.

Private sector must also be brought onboard, not only in regulating them from discriminating against carers in their recruitment processes, and in their daily human resource management; they must also be incentivised to hire carers into their businesses. One of the ways that this can be achieved is by offering corporations and SMEs double deductions on labour expenditure, and discounted employers contributions to Social Security Organisation on befitting roles offered to qualified and registered carers.

It is appreciated that the proposed measure to encourage the private sector will entail political will right through the full spectrum of political hierarchy; but it is a worthy cause to pursue. This involves an ideological swing to the centre left, by institutions that have been inherently stationary at the right ie the BN government and the private sector. But no one can deny that saving a family from being consumed by poverty today; is the best way to prevent another family from being dependant on the state after tomorrow. Helping a carer stay on his/her feet today, is the preservation of another vessel of productivity for the economy tomorrow.

The long term productivity gains from carers

Although we, in opposition have no direct recourse to public funds to help these people in desperate need, we are also aware that even our counterparts in government have no formal recourse to financial assistance. It is a fundamental ideological difference between a centre left, ‘welfare by choice’, social-democratically driven policy that DAP subscribes to; versus a rightist, neo-liberal, ‘welfare by necessity’ approach that BN practices.

The carers’ aid that I seek to be brought forth, is not one that encourages nor perpetuates dependence on aid. Within the institutionalised aid program, must be an exit strategy that empowers the carer to actively better their own circumstances, with incentive programs that drives them back towards independence. This can be done through both private and public sector provided retraining and re-empowerment programmes.

There is also energy that can be harnessed for carers to help each other. Carers’ support group, if well organised, may be able to provide respite to struggling members. With the assistance of social work professionals and some government aid, carers can be organised in to cooperatives that enters into business activities that provides decent work for its members, and maybe also surplus funds to help other carers.

We are at a juncture in our nation’s journey of socio-economic progress, where carers must not be left behind. They must not be forgotten, because of the loss of productivity if they continue to be displaced; they must be acknowledged, assisted and rescued from despair and impending poverty, because it is only the humane and right thing to do.  What more if they can be re-empowered to once again be net producers for the economy; and help others of the same plight but in a sustainable way.