The need for a better support system – Breaking Barriers – The Borneo Post – 2 November 2013

The need for a better support system
by Peter Tan. Posted on November 2, 2013, Saturday

THE World Health Organisation and World Bank world report on disability states that 2 to 4 per cent of the world population experience significant difficulties in functioning.

These proportions when extrapolated to the Malaysian context indicates a number of between 600,000 and 1.2 million persons out of a population of 29.9 million.

For every disabled person we see in public places, there are many more with severe impairments who are unable to come out.

Their conditions include advanced stages of muscular dystrophy, high level spinal cord injury, and severe cases of poliomyelitis and cerebral palsy.
The issues that they face are seldom discussed.

Like they say, “Out of sight, out of mind.”

Persons with severe impairments require round-the-clock support in every aspect of their activities of daily living.

The current infrastructure and support systems in our country are grossly inadequate for them to achieve a reasonable quality of life.

These stumbling blocks to their inclusion segregate and marginalise them from society.

They are not the only persons affected.

Their immediate family members are also affected as a whole.
Someone, usually the mother, has to become the sole caregiver if the person is unmarried.

If one spouse has an impairment that requires constant support, the other half may have to give up a promising career to provide full-time care.
The family finances take a hit if the mother or both spouses are the breadwinners.

Those most affected in such situations often do not have insurance, Socso or other forms of compensation, while others are impaired since birth or at a young age.

I got acquainted with a family where both parents are hawkers running a noodle stall in a small town.

Although they are not well off, they lead a comfortable life.

The mother had to stop working at the stall to care for the son who became
paralysed from the neck down in a road accident.

He was a student then.

Their savings were depleted by medical bills, traditional treatments, and acquisitions of assistive devices and disposable items.

The mother constantly worries about what will happen to her son after her death.

Such concerns of parents with disabled children are the norm, an issue that has not been effectively addressed as yet.

The Welfare Department provides financial assistance to disabled persons who are incapable of work and also for carers of those who are bedridden and chronically ill.

The fact sheet in the department’s website states that the objectives of the financial assistance, among others, are to improve the quality of life and to avoid or minimise admission into welfare institutions.

Indeed, institutions are not conducive places to spend the rest of one’s life.

At RM150 and RM300 respectively, these amounts are not enough to sustain the basic needs of a family, especially one where the regular income is drastically reduced or has stopped altogether.

Apart from groceries and utility bills, there are other recurring expenses for disposables items, supplements and medicines not supplied for free by government hospitals, which can cost thousands of ringgit every month.

Additionally, there is also a need for highly customised assistive equipment such as wheelchairs for mobility.

While I do not expect the entire household’s expenses to be covered, the financial assistance should at least cover the employment of assistants to help with the disabled person’s activities of daily living.

Assistants can relieve the stress and labour of the sole caregiver.

Consequently, the mother or spouse can return to work to provide for the family financially.

The disabled person can even live independently from the family with the support of assistants if he so desires.

These assistants also ensure that support is not disrupted should the caregiver become incapacitated due to illness, accident or death.

Such schemes are being practised in the United Kingdom, United States, Japan and many other countries.

The governments there provide sufficient allowance for disabled persons to hire assistants based on needs.

On top of that, grants are provided to make the home accessible, for example to widen doors and install ramps, and improve access to bathrooms.

It is time our government review the provisions of assistance to severely impaired persons to reflect the present-day trend of the support system in developed countries, a coveted status we want to achieve by the year 2020.

The current scheme by the Welfare Department is a token that does not address those pertinent needs.

More than often, affected families have to approach or even depend on their extended families to supplement their expenses.

Together with an accessible infrastructure and inclusive policies, severely impaired persons can come out conveniently, even become gainfully employed and participate meaningfully in society.

This has been proven in the countries mentioned where the support provided has empowered severely impaired persons to lead productive lives and contribute to nation building.

It is not a matter of whether our country can afford to allocate funds for such a scheme but whether we can continue to ignore the hardships faced by severely impaired persons and their families.

We cannot claim to be a caring society unless we put our money where our mouth is.

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Author: Peter Tan

Peter Gabriel Tan. Penangite residing in the Klang Valley. Blissfully married to Wuan. A LaSallian through and through. Slave to three cats. Wheelchair user since 1984. End-stage renal disease since 2017. Principal Facilitator at Peter Tan Training specialising in Disability Equality Training. Former columnist of Breaking Barriers with The Borneo Post. This blog chronicles my life, thoughts and opinions. Connect with me on Twitter and Facebook.