Kuala Lumpur Independent Living Centre
Independent Living (IL) is still at its infancy stages in Malaysia although it was introduced in Malaysia in 1999. Disabled people are still marginalised in all areas of their lives including education, employment and social support services.
This paper looks at the situation of disabled people, history of IL and the challenges of implementing IL in Malaysia.
Malaysia has a population of 27.17 million people. A total of 197,519 disabled people have registered with the Department of Social Welfare Malaysia (DSW) at the end of 2006. This figure is not a true reflection of the number of disabled people as registration is voluntary. At the moment there is no anti-discrimination law. A proposed Persons with Disability Act drafted in 2002 has not been sent to the Parliament yet.
1 SITUATION OF DISABLED PEOPLE
1.1 Prevalence of Medical Model of Disability
The medical model of disability is deeply entrenched in the mindset of Malaysians. Disability is viewed as other people’s problems rather than the collective problem of society. There is a strong prejudice towards disability and disabled people. The general perception is that people are disabled by their conditions rather than by structural and attitudinal barriers.
1.2 Institutionalisation of People with Severe Disabilities
People with severe disabilities are mostly cared for at home by family members or by a domestic helper employed by the family. Other options include staying in institutions for disabled people or private nursing homes for the elderly.
Many of the institutions double up as training centres to provide vocational skills to residents for them to earn a living. Emphasis is placed on financial independence. This propagates the misconception that the ability to earn a living is the key to independence.
The DSW is giving out an allowance of RM200 (USD60) per month to disabled persons who are working and getting a monthly salary of below RM750 (USD215). Those who do no work are not entitled to this allowance.
Private nursing homes for the elderly are profit-oriented. They will accept anybody as long as the monthly charges are paid promptly. These homes are run like institutions where the daily routines of residents are regimented.
These options leave very little room for disabled people to assert their right to live independently. They have limited or no control over what they want to do. They do not have much say in how they want to live their lives. Dignity and self-determination are surrendered just to have a place to stay and be cared for.
1.3 Moving Towards Social Model of Disability
There is an urgent need to implement measures to advocate for the self-determination of disabled persons in Malaysia. Through the initiative of Japan International Cooperation Agency (JICA) and the DSW, a series of seminars and workshops were organised to empower disabled persons. These colloquiums have sowed the seeds of Social Model of Disability not only in disabled people but in officers at the DSW. This is a good move as welfare officers are now able to empathise better with the challenges faced by disabled people.
2 IL MOVEMENT IN MALAYSIA
2.1 History of Independent Living
The first IL Workshop in Malaysia was conducted in Kuala Lumpur from August 28 – 30, 1999 by a peer counsellor from the Human Care Association of Japan. This workshop was organized by a group of disabled leaders in Malaysia in close coordination with the Asia Disability Institute. 14 participants attended. Following that workshop, the IL Programme manual was translated into the Malay language.
From 2005 to July 2007, the DSW and JICA have organised one IL Workshop and Seminar and two Peer Counselling Workshops in Kuala Lumpur respectively. These trainings were all conducted by peer counsellors from the Human Care Association and assisted by local resource persons. To date about 60 disabled persons have been trained on IL and peer counselling in these courses.
Several one-day IL seminars have been held in various states outside Kuala Lumpur, namely in Penang, Perak and Johor by peer counsellors from the Human Care Association and Malaysia. IL workshops and peer counselling courses are also conducted by individual organisations working on IL projects for their members. Peer counsellors have been visiting hospital rehabilitation units to share the concepts of IL to newly disabled people and provide information support services provided by the government.
Recently, the IL Programme Manual was translated into Chinese. IL and Peer Counselling video have also been translated into Malay, English and Chinese in a project funded by JICA. These translated versions are important as Malaysia is multi-ethnic country of Malays, Chinese and Indians. Materials in different languages give a better understanding of the contents.
In 2005 and 2006 respectively, the DSW and JICA organised Training the Trainers Workshop on Disability Equality Training (DET). This was to familiarise leaders of the IL movement in using various methods to advocate for the removal of structural and attitudinal barriers.
Since 2006, there has been an increase in high-profile advocacy activities on disability issues. These include advocacy on accessibility in the built-environment and public transport, and a call to the government to expedite the passing of the Persons with Disabilities Bill in the Parliament to remove discrimination and protect the rights of disabled people in Malaysia.
2.3 IL Centres
The support extended by JICA and the Human Care Association since 2005 in organising trainings for disabled leaders coupled with the current advocacy activities have created a greater awareness among disabled people on their rights and the concepts of Independent Living. The time is ripe now for the establishment of IL Centres in Malaysia.
Currently IL-based activities are being conducted by organisations on an ad-hoc basis as there are no IL Centres in Malaysia that adheres to the principles similar to those set by the National Council on Independent Living (NCIL) and Japan Council of Independent Living Centres (JIL).
Nevertheless, by the end of 2007 two Independent Living Centres will be officially set up in Malaysia based on established IL Centre principles. One is in Kuala Lumpur and the other in Petaling Jaya, a city next to Kuala Lumpur.
3 CHALLENGES OF THE IL MOVEMENT
3.1 Reservations Regarding IL
IL is a relatively new concept in Malaysia. As with all things new, doubts and fear of the unknown arises. There is a need to disseminate more information to target groups.
3.2 Funding of IL Centres and IL-Related Services
At the moment, the government does not provide grants for the running of IL Centres or for personal assistant services. IL Centres have to look for alternative sources of funding.
3.3 Peer Counsellors
Malaysia is not lacking in peer counsellors and resource persons on IL. About 60 persons have been trained since 2005. However, most are working in full-time jobs not related to IL. Financial independence is still seen as the only way to achieve independent living. There is a need to have peer counsellors working fulltime in IL Centres.
3.4 Personal Assistant Service
It is thought that with financial independence, carers can be employed to act as personal assistants. These carers are brought into Malaysia as domestic helpers and have two-year contracts. Some leave after their contract expires while others renew the contract for a few more terms.
The cost of employing domestic helpers is escalating. Many prefer to work in countries such as Singapore, Hong Kong and the Middle East where the salary is higher.
Unlike IL Centres which have a pool of personal assistants, there is only one domestic helper for one disabled person for the entire two-year duration. If the domestic helper is unable to work for any reason, the disabled person will be stranded. There is a need to build teams of local personal assistants to ensure continuity of service.
4 FUTURE DIRECTION
Subsequent to the setting up of the two Independent Living Centres, an umbrella body of IL Centres Council similar to that of the Japan Council on Independent Living Centres (JIL) will be formed to regulate the standards of Independent Living Centres. There are also plans to set up two more IL Centres within the next three years. One will be in Penang in the north and the other in Johor in the south.
To ensure the sustainability of these Independent Living Centres, it is essential to get support and funding from the government. It is also vital to get the government to provide funding for personal assistant service. To this end, Independent Living Centres and the Council have to actively engage the government and push for the recognition of IL as the fundamental human right of disabled people to live independently in the community with full support from the government.
This is an exciting time for disabled people in Malaysia. The country aspires to become a developed nation by 2020. The government is working on building human capital to power this aspiration. Disabled people in Malaysia would like to see the phrase “human capital” to include disabled people too. Recent high-profile advocacy activities have made the government aware of the problems faced by disabled people. In a way, we have created a demand and the government has no choice but to supply.
Disabled people too have to keep up with the advocacy activities. The seeds of IL have been sown in Malaysia. We have to continue nurturing it. The beginning may be difficult. The first few baby steps are always challenging. We believe that by putting our hearts into it we can slowly bring about changes our lives through IL. We have taken the first step in a journey of one thousand miles.
Department of Social Welfare Malaysia.
Department of Statistics Malaysia.
Nakanishi, Shoji (1997) Historical Perspective and Development of Independent Living Movement in Japan. Human Care Association.
Nakanishi, Yukiko (1999) IL Movement Spreads in Asia. Disability International; Asia-Pacific Region, Vol.11, No. 2 1999.
National Council on Independent Living.
Tan, Peter (2005, 2006 & 2007) The Digital Awakening.
Note: This paper was presented at the 7th Disabled Peoples’ International World Assembly in Korea on September 6, 2007.