By Hariati Azizan firstname.lastname@example.org
you get older, you might find even getting out of bed in the morning or going to
the toilet difficult. With age, your mobility declines as your muscles become
weak and bones become brittle.
Imagine if you are not able to walk at all, or see.
The disabled, especially those with physical disability, have had to struggle with the simple daily routines all their life, says disability rights activist Anthony SB Thanasayan.
“And as they get older, the already difficult daily routines become even more difficult for them,” says Anthony who is also president of Malaysia’s first and only animal assisted therapy society called Petpositive.
He stresses, “The needs and problems of the ageing disabled are double those of their able counterparts as their disabilities age along with them.”
This is something that the wheelchair bound Anthony, now in his mid-50s, experiences daily.
He shares that he sometimes needs help even to dress, so what more to wash his clothes and do other housekeeping chores.
Going out, even to the nearby convenience store, has become a “big event” that needs a lot of planning ahead, he adds.
“When I decide to go out in my wheelchair, there are a lot of things I will need to plan ahead these days like getting a helper to dress me up and accompany me. I used to be able to do these things myself, including transferring into my hand-powered car, but nowadays, you got to be a bit careful.
“It is not only physically harder now that I am older, I am also at more risk of falling; it’s always best to have able-bodied help around to prevent nasty falls,” he says.
This is why Anthony and many members of the disabled community are calling for the Government to help provide personal care assistants or personal attendants (PCA) for the ageing disabled.
“The PCAs are able-bodied professional helpers who are trained to help the ageing people with disabilities with their daily living activities such as cooking, cleaning and even bathing,” he explains.
Many countries, especially those in the developed world like Germany and Japan, are sponsoring such a service for their disabled and aged, Anthony notes.
It is also a service that is promoted by various international agencies like the World Health Organisation to accommodate the rapidly growing number of elderly persons around the world.
It is estimated that Malaysia will officially become an aged nation by 2030.
According to the Department of Statistics, there is an estimated 2.7 million senior citizens (aged 60 and above) as of 2014. There are up to 400,000 disabled Malaysians registered, a growing proportion of which are aged above 50.
Many of the disabled Malaysians who are ageing have no one to turn to for help and care.
Anthony believes that the Government should at the very least provide a special allowance to enable the disabled to hire a PCA.
“It will be a lifeline for the ageing disabled, as well as the increasing number of ageing abled,” he notes.
While the Women, Family and Community Development Ministry has been running a Home Help Services programme since 1994, it is still focused on nursing homes, institutions and hospitals.
The ministry conceded that they have yet to provide for the ageing and disabled individuals who live on their own or with their families due to a shortage of qualified manpower and volunteers for the programme.
Another area that urgently needs to be addressed is the accessibility to healthcare, especially transportation to hospitals and medical centres for disabled persons.
With the high cost of taxis, for instance, it is getting increasingly difficult for ageing disabled patients to get to the hospital and back.
“Some cabs even refuse to take wheelchairs, so many are unable to go to hospital to seek medical treatment for their conditions,” says Anthony, who suggests that ambulances or other vehicles be provided by hospitals for wheelchair-using patients, especially by the hospitals’ rehabilitation units.
G. Francis Siva, who is also wheelchair-bound, highlights another common grouse.
“Although hospital consultations are free for the disabled, important medications are not always available and we have to buy them on our own,” says the president of Independent Living and Training Centre (ILTC).
With no special medical benefits for the disabled, many have to rely on their monthly allowance of between RM200 and RM350 provided by the Welfare Department to cover their medical needs, on top of their daily needs.
“Our quality of life is bad. Many of us are poorer than the poor,” adds Francis.
Their financial woes are further compounded by the Goods and Services Tax (GST) which does not exempt many of the things and medicine the ageing disabled needs.
As Francis points out, assistive equipment and essential disposable items such as catheters, colostomy bags and wheelchairs were previously not subjected to the sales tax and import duty but under the GST, they are taxed.
Now these basic daily items for the disabled cost more.
“We have no choice (but to buy them anyway) as we need to use these assistive tools every day.
“To help us cope with the increased prices, our allowance was increased by just RM50 (from RM300 to RM350) but members of Parliament gave themselves a RM4,500 pay rise,” says Siva.
“What can we do with RM 350? For me, it is not enough as I have to spend an extra RM200 each month to get the items I need.”
Worse, the monthly allowance of RM350 is given only to people with disabilities who are employed.
“Those who have no jobs are entitled to only RM200 a month. Even so, many get less as they have to be ‘assessed’ by a welfare officer first who will then decide on the amount to be allocated to him or her.”
He says the rationale for the red tape is to encourage the disabled to go out to work but the environment and society are not so conducive for the disabled to be working.
“The Government wants to encourage the disabled to go to work but they have not tackled the basic issues that will enable us to go out and work like accessibility on public transport and medical centres first.
“They need to provide basic facilities like toilets and enough space for us to manoeuvre our wheelchair first before making promises to give us a job,” he opines, stressing that the allowance for the disabled should be raised to at least RM600 to 800 for all, regardless of whether they have a job or not.
As for the GST burden, Francis proposes that the identification card of the disabled or the OKU card be used to waive GST for their basic necessities.
“The same document is used for air ticket discounts, free road tax renewal, free telephone lines and free international passports.
“So we should be able to show our card to cashiers before paying and get the GST waived.”
Crucially, he adds, the disabled community should be consulted to work out a long-term solution for the problems faced by the disabled community.
“For example, there was no discussion between the disabled community or disability NGOs and the ministry before the implementation of the GST.
“The Government and politicians just like to invite us for festive open houses and other events but what we need is a long-term solution to our predicament.
“Just invite us for a proper consultation so that we can discuss and work out our problems,” he says.
Senator Bathmavathi Krishnan, the de facto parliamentary representative for the disabled community, agrees that the allowance for the disabled should be increased as their cost of living is more than RM1,000, depending on the type of disability.
Financial aid should also be given to the families caring for them, while GST exemptions should be given for basic necessities such as catheters, diapers, daily supplements and “food items used for special diets”, says Bathmavathi, who became a paraplegic in 1975 when she was 21 years old.
Bathmavathi, who was sworn in as a senator in Dewan Negara in 2013, also believes that the OKU cards could be used by disabled persons to get GST exemption for their daily essentials.
An OKU card is conclusive proof of a person’s disability under Section 25(1) of the Persons With Disabilities Act, she adds.
As for personal assistant care for the ageing disabled, the senator says the Women’s Ministry is currently working with the Youth Ministry to get more young people to train and volunteer as personal assistants.
Commending the ministry’s existing Home Help services programme, she concedes that it is not enough and getting more young people to volunteer would be a big boost.
PCA can enable the ageing disabled to continue living independently in their own homes or to help them continue to work if they are already employed but need assistance to get around.
The trained volunteers can also help run the day-to-day affairs of the ageing disabled such as personal care, hygiene, shelter, paying bills, healthcare and even friendly chats.
“Once a week visit, as it is now, is not enough,” she says.
Bathmavathi adds that other initiatives they are exploring include better access to medical care and door-to-door transport service as the aged may not be able to get in and out of their modified cars to drive independently.
“Those ageing with disability would also be homebound, so the other services we are looking at are mobile clinics and home visits by medical staff.”
Most important, she adds, is to change the mindset of the public about the aged and elderly disabled, especially among the young.
“We need to raise their awareness to the importance of caring and showing respect to the aged and disabled members of the community. There is so much that the ageing disabled persons can contribute to society, if given the chance and the right help,” says Bathmavathi.