Inside the Human Care Association, the first independent living centre in Japan established in 1986.
I WAS out running errands the whole of Thursday and did not get to watch Prime Minister Datuk Seri Najib Tun Razak table the much anticipated 11th Malaysia Plan (11MP) in Parliament. When I got home, I downloaded a copy of his speech and the massive 389-page document to read what is in store for us in this new five-year plan.
As I glanced through the pages, the point that caught my attention most was that the government, with the cooperation of the private sector, is targeting to have seven more independent living centres (ILCs) throughout the country. This is estimated to benefit 11,000 disabled people.
I’ve written about this topic several times in this column but now it’s as good as any other to revisit it seeing that it is mentioned specifically in the 11MP. My first thoughts were whether the ILCs are going to be modelled after those in the USA and Japan where the system is already established and working?
I am heartened by the government’s move to finally recognise this important aspect in the inclusion of disabled people in mainstream society 10 years after the practice was first introduced in Malaysia. If implemented correctly, disabled people, especially those with severe impairments, can look forward to a significantly better quality of life. Any disabled person who needs some form of assistance with activities of daily living will benefit from the services of an ILC.
As far as I know, only one ILC in Malaysia is recognised by the Welfare Department. The centre is managed by the Society of Independent Living for the Disabled Selangor. It was established in 2008 and is based in Petaling Jaya.
At present, severely disabled people are dependent on their family members to provide care for them. Some have to live in nursing homes when family members are unable look after them. In both cases, they have few opportunities to exercise control over their life as most of the decisions are usually made by the caregivers, be they family members or paid staff.
On the contrary, the practice of independent living is based on the philosophy of giving disabled people the right to exercise and exert choice, self-respect and self-determination, and living in the community with the support of personal assistants instead of living in institutions.
There is the need to understand that independent living is not about a disabled person being able to perform all the activities of daily living independently and without help. The word ‘independent’ here means disabled people taking responsibility for their own lives to realise full participation and equal opportunity in society.
Where there is a need, personal assistants can provide support for the tasks required like feeding, bathing and toileting. Personal assistants are not volunteers but salaried workers receiving market-rate pay. This is to ensure that the services rendered by them meet the expectations required.
My training in Tokyo and Bangkok on this subject gave me valuable insights into the inner workings of ILCs. In Japan, to qualify as an ILC, the management must be headed by a disabled person and the majority of committee members must be disabled persons.
These centres are purely administrative offices to coordinate services that are vital to the independent living of members, namely the provision of relevant information, personal assistant referrals, peer counselling and advocacy activities. ILCs do not provide vocational training but concentrate on its core activities of providing services. The only training conducted in the centres are independent living skills and peer counselling, both which are crucial in preparing members to live in the community. There are no long-term residential facilities in ILCs except for the experience room where members learn to live with the support of a personal assistant. This learning process can last from three days to one week. Members are not allowed to stay there indefinitely.
Traditionally, ILCs are established by disabled people to provide services and for carrying out advocacy activities. As they go along, these centres apply to the government for funding to support their activities, mainly in the provision of personal assistants for members. They also procure funds from private sectors for such purposes.
Here in Malaysia, the government is taking the lead in offering funds in establishing ILCs. Disabled people should make full use of this opportunity to expand the practice of independent living in the country.
However, other than what I read from the documents downloaded from the Office of the Prime Minister’s website, I have been unable to gather further information on the implementation and mechanics of this scheme.
My main concern is that the ILCs are not run true to the philosophy of independent living. There are a number of centres that do not provide the core services to support the independent living of members but still call themselves ILCs.
One of these is the group home where disabled people are gathered to live together and trained to perform tasks by themselves. I must emphasise that it is neither the role of ILCs to conduct such training nor provide such residential facilities.
As I see it, a group home is essentially another form of segregated living and institutionalisation where those residing in such facilities cannot exercise the freedom of choice to choose who they want to live with, do what they wish as and when they wish. Additionally, life and routines in such homes are regulated. But I am just speculating. Without more information from the Welfare Department, we have to wait and see. Nevertheless, I sincerely hope the conditions to establish the ILCs will adhere to the principles of independent living and stay faithful to the spirit in the provision of essential core services to support disabled people to live in the community.
Other than that, the 11MP also committed to increase the employment of disabled people in the public sector and improve the accessibility in public places, among others. This is nothing new. These areas have been mentioned in previous Malaysia Plans and are issues disabled people have been harping on for the longest time.
As far as I can see, little has been done in the form of implementation and enforcement. Talk to any disabled person and I am certain they will confirm what I have said. Our struggles remain the same from one five-year plan to another. Dare I hope the situation will change for the better with the 11MP?