Making a case for independent living

YOU’RE a parent. You have an adult daughter. All her limbs are paralysed. You help her with all her activities of daily living. From using the toilet to dressing up and brushing her teeth, you have been doing all that for her since 10 years ago after she was knocked down by a car on her way to college.

You had to resign from work to ensure she is well taken care of. It’s hard work. You don’t get a respite, no days off, and no one to take over even for a few hours. Yet you don’t complain. Because she is your daughter and you want to give her the best you possibly can.

“I can’t fall sick,” you keep telling yourself, but age is catching up. Deep inside, you know you will go to meet your maker one day. You wonder how she is going to survive. Who is going to be there to do all the things you are doing for her? You constantly worry about that but what can you do?

You’re the adult daughter. You wish your mother could go out and relax with her friends once in a while. But she wouldn’t hear of it. “You have to be looked after. If I don’t do it, who will?” she asked you. And you have to concur. Providing for your needs is a full-time job and only she can and is doing it.

You see her growing old and getting frail. On many nights, when all is dark and quiet, and sleep is elusive, you also wonder how you can live on after she is gone. You worry all the time but what can you do? You can’t help yourself. You can’t do anything to ease her burden.

These are sad scenarios that are unfolding in families where one member has severe impairments, be it a child, sibling or spouse. The worries never cease. I know because I have been there before. The uncertainty is unnerving. Not being able to get assistance with our activities of daily living can be a matter of life and death.

The World Report on Disability published by the World Health Organisation and World Bank estimates 2 per cent to 4 per cent of the world’s population have significant difficulties in functioning. This means they require some form of assistance in their daily lives. In the context of Malaysia, those percentages amount to between 640,000 and 1.28 million people. As our population increases, so will the numbers.

But the fact is that people with severe impairments around the world are able to live independently with the support of personal assistants. I have seen this with my own eyes when I was in Japan for a two-week intensive training on Independent Living. Disabled people there live in the community with the support of personal assistants who help them with all their activities of daily living.

I have also met disabled people from the United Kingdom, United States, South Korea, Taiwan, Thailand, Philippines and Pakistan who are practising Independent Living. The salary of personal assistants in these countries are either fully or partially funded by the government. Independent Living can only be sustainable in the long run with the support of the government.

On the other hand, there is also a necessity to be vocal about the need for personal assistant service by people who require it. Disabled people must play their part by organising themselves to create awareness of Independent Living and make known such services are essential to their wellbeing. Only when there is demand from the ground will the government take the issue more seriously.

In 2015, Prime Minister Datuk Seri Najib Tun Razak proposed the setting up of seven new Independent Living Centres with the cooperation of non-governmental organisations and community-based organisations under the 11th Malaysia Plan (11MP) running from 2016 to 2020. These centres were supposed to benefit 11,000 disabled people.

Shortly after the announcement, an informal committee comprising representatives from the Welfare Department (JKM), Japan International Cooperation Agency (Jica), Human Care Association of Japan and local resource persons was formed to discuss and work on the project.

We held weekly Skype meetings to organise a series of seminars and workshops with local and Japanese resource persons to train potential candidates who must be disabled persons to manage the ILCs. There were also plans for a study tour to Tokyo for selected candidates and officers from JKM involved in this project.

The funding for the establishment of ILCs and implementation of services was to come from the government. Jica and Human Care Association also agreed to fund part of the project, especially on capacity building and human resource development.

Unfortunately, the project couldn’t proceed because there was no allocation from our side in Budget 2016 and 2017. I was beginning to lose hope it would ever materialise under the 11MP although I knew JKM officers involved in the project have been working hard to submit the proposal to their higher-ups for funds to get it started.

I saw a glimmer of hope again when JKM invited me to give a briefing on the implementation of Independent Living Centre recently. This briefing held at the Ministry of Women, Family and Community Development in Putrajaya last Thursday was attended by members of the National Council for Persons with Disabilities, JKM officers and other stakeholders.

At the two-hour session, I shared the concept of Independent Living based on the Japanese model and how it could be adopted, adapted and implemented in Malaysia. This was part of the JKM’s effort to harmonise the guidelines on the establishment and management of ILCs. The other aim was to expose stakeholders to the concept and to enable them to formulate strategies to move this project forward on their part.

I earnestly look forward to something positive coming out of this briefing. The quality of life of many of my disabled friends can be vastly improved with the support of personal assistants. As it is now, they are dependent on family members or spouse to help them.

I know my life will be more productive with a personal assistant. My wife is working full time and she cannot be there to assist me all the time. There were instances when I had to wait for a whole day for her to get home from work to help me with tasks that I can’t do by myself.

Hopefully, this initiative by JKM will lead to funds being allocated for the project in Budget 2018. Even if we begin next year, I foresee we will not be able to achieve the target of establishing seven ILCs by 2020. Training of managerial personnel, and the establishment and implementation takes time. Still, the successful establishment of one or two ILCs will be a good start. I am keeping my fingers crossed.

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