Khor Ai-Na, Akemi Utsumi and Terri Faust take a peek inside an institution for people with disabilities and learning problems and call for a change of attitude towards special education.
Taman Sinar Harapan (TSH) Kuala Kubu Baru (KKB) started in 1983 with 120 children but the number grew to about 200 in less than four years. The institution was set up specifically for those with severe disabilities. Volunteers from NGOs, including the authors, started getting involved as early as 1984.
Living conditions were deplorable at that time where mortality was about five per month. Residents were bathed (hosed down) with cold water on concrete floors at 6.00am in the morning. Children lying in their cots were fed in groups with a ladle shoved down their throats. Some residents were kept naked because it was a chore to change them. It was not uncommon to see children sharing cots, being tied up or playing with their own faeces.
Developments and programmes
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Ms. Akemi Utsumi (a JOCV – Japan Overseas Co-operation Volunteer – with TSH Seremban at that time) recommended the placement of full time JOCV volunteers at TSH KKB. This two-year full-time placement began in 1986 with volunteer Ms. Hitomi, followed by Ms. Ayako, Ms. Michiko and Ms. Junko.
Then, getting rid of the stench, safety, cleanliness and hygiene were the focus of Ms Hitomi’s work. Classroom activities and programmes were introduced by Ms. Ayako. The institution’s then Assistant Director, Mr Maniam Chettiar, proposed the Group Homes (GH) in the community project but it was initially rejected by JKM (WelfareDepartment) HQ. However, it was later accepted upon re-submission under Ms. Michiko’s name. The GH project in KKB proved that people with severe disabilities could enjoy quality life in the community. Residents even ran a stall in the local pasar malam. These initiatives were made possible with the grassroots direct involvement of the Assistant Director. According to Mr Maniam, the GH scheme has even worked out to be a cheaper option.
Unfortunately, the GH project was discontinued soon after Mr. Maniam’s transfer to TSH Jubilee. [Mr. Maniam was in TSH KKB from 1986 to 1992]. Fortunately, the independent living concept of group homes had lingered on and several more capable residents were able to enjoy having their own space or room within the TSH KKB.
When some of us visited TSH KKB in the early 1990s, we were pleased that the anticipated stench no longer greeted us. However, we also did not see any classroom activities running. We noticed that there were two snoozelan rooms which had been set up with public donations but unfortunately, they were locked.
Over the years, there had been some bad publicity in the Chinese press and more recently, in the English press on the inhumane care at TSH KKB. It has resulted in building renovations and of course service improvements. But these improvements have been too slow and not up to the mark; new initiatives were unfortunately not sustained.
Today 26 years later, TSH KKB has violated almost all the articles of the UN Convention of the Rights of Persons with Disabilities (UN-CRPWD) plus our very own Persons with Disability Act 2008.
A look at the present – what can be done now
Recommendations on residential care
a) Policy of deinstitutionalisation – This future direction must be made clear. If Malaysia is unable to provide quality residential care, then it is better for us not to offer this service at all.
b) Small units – Intake into the current seven TSH in the country should stop as institutionalisation should be phased out. Steps must be made towards small-scale residential care for the current residents.
c) Meaningful activities – Residents in the institution must have access to meaningful activities as part of their daily routine – 24 hours in the same environment for a week/month will make anyone crazy! Life is short but surely it can be made more meaningful and productive.
d) Increase staff–client ratio to ensure quality care – This means increasing the number of direct care-givers not gardeners and administrators!
e) Family responsibilities – Policies must be made clear to families of residents and there must be strict enforcements e.g. mandatory home visits to the family during festive seasons; enforce the maximum three years residential placement. Work with the resident’s family during the interim period of his/her stay at the institution to prepare for his/her eventual return after a designated time.
f) Care with a heart – The use of chains, canes and cages must be prohibited as it is a clear violation of basic human rights in this day and age. The use of restraints which may help hyperactive or self-abusive children must always be a temporary measure.
g) Care with dignity – Dignity is about respecting the individual. This means that residents, regardless of their severity, must be consulted as far as possible on issues affecting themselves. They must also be empowered and encouraged to make informed decisions and choices.
h) Institutional care for the severely disabled – If this is still needed, then it should be provided under the Ministry of Health as a hospital service. This will ensure that care is provided by qualified medical professionals such as doctors, nurses, therapists, and dieticians instead of attendants.
Recommendations on community care and support
a) Family support – various options of services must be made available to families before resorting to institutionalisation. Financial, emotional and practical support must be provided to enable the child to stay with her/his family as far as possible such as the following:
– Counselling and advice
– Training on nursing care
– Financial aid for assistive technologies/equipment
– Regular home visits by therapists
– Buddy programmes with volunteers in the community
– Community-based rehabilitation
– Therapy programmes in the homes
– Home helper support
– Transportation support
– Meals-on-wheels service
– Day-care/training programmes
– Short-term/overnight respite care
– Foster parents scheme
– Toy libraries
– etc.
b) Network with NGOs – Liaise closely with local NGOs in the state for available support services. If none of the above is available in the local community, outsource these support services by providing financial assistance to local NGOs or private initiatives.
c) Group homes – These should be set up in the local community, as close to the family as possible. Smaller units will foster closer relationships and dignified living. Each resident should have an individualised plan.
Recommendations on human-capacity building
a) Many of the staff at TSH are dedicated and committed as can be proven by the number of years of their service. They are certainly not to be blamed for doing their job in providing daily care. They just need to be shown the right way to care.
b) Directors and managers must not just be qualified but must believe in what they are entrusted to do i.e. set direction for the provision of services. They must be exposed to all the best practices overseas and all the good models locally available and keep up with the global movement. They must also be dynamic and resourceful innovators in implementing programmes to maximise the client’s potential. They cannot afford to makan gaji or ikut perintah blindly.
c) Policy makers must have clear understanding of the clientele and all issues pertaining to the situation. They must be wiling to accept constructive criticism and comments and be bold to rectify the situation, make changes to policies and set forth new directions.
d) Politicians must create positive public awareness and encourage change in society’s understanding of disabilities in line with the concept of 1Malaysia and the principle of an inclusive society.
e) Family members must have access to professional consultation, be given various options of service delivery available in the community and be empowered to make wise and informed decisions.
f) The individual with disability, however severe, must be involved in the process of decision-making and should not be left totally out of the picture. Alternative and augmentative communication systems (eg. Makaton, symbols and visual supports, Etran frames, electronic aids, talking mats, etc.) should be explored to assist with understanding and expression.
g) Malaysia must realise the acute shortage of experts and invest more in human capital and provide for more medical, rehab and educational professionals i.e. psychologists, therapists, social workers and teachers.
h) Universiti Perguruan Sultan Idris (UPSI), which trains special education teachers, is located in Tanjong Malim, a mere 15-minute drive away from KKB. This provides an excellent opportunity for collaborative programmes as their resources should be tapped.
A look towards the future – what must be changed
Roles of the welfare department
We can always boast of the many types of activities we provide. While the variety and quantity may look good on paper, we will only be fooling ourselves if the quality is below standard or pathetic. There must be self-realisation: it is better for us to admit our weakness and do something about it realistically than to cover up and remain in disillusion.
Acknowledgements and compliments must be given to the Welfare Department for its initiatives and the provision of services for the OKUs such as residential care, training programmes, community- based rehabilitation programmes, accessibility, advocacy, job coaching, and independent living over the years. We cannot deny that the JKM has its hands full and is overburdened with the overall welfare of the nation such as natural calamities, underprivileged children, the elderly and vagrants.
Moreover, issues affecting OKUs should not remain under the jurisdiction of the Welfare Department for the simple reason that not all OKU issues are welfare-related. In a major step to move away from a charity-based and towards a rights-based approach, eventual disassociation with the Welfare Department may be deemed inevitable.
JKM just does not and will not have enough resources or the expertise to handle all specific matters pertaining to OKUs which can often be very complex. Many of the services which were initiated by JKM have now grown beyond what it can provide. JKM can no longer shoulder these responsibilities on its own and be expected to do a good job.
Education
We often wonder what the common perception is of people who have intellectual disabilities or those with severe or multiple disabilities. Do we think that their condition is beyond hope or do we sincerely believe that they can learn? Our honest response will somehow determine our action.
Conventionally, we have focused on their disabilities. To move forward, we must learn to see the ability and potential within the individual. We believe that all children are educable and trainable. The Education Act 1996 (Sp Ed 1997) Regulation 3 has to be revoked as this discriminatory policy empowers the authorities to differentiate and label some children as educable and uneducable. If at all, this can only be ascertained professionally by qualified educational psychologists, certainly not by a desk officer!
Education of OKUs should rightfully come under the purview of the Education Ministry. The current CBR/PDK programmes (under JKM) are predominantly that of teaching 3Rs, activities of daily living skills in a classroom environment. Over the past 20 years, CBR/PDK programmes have proven that children with disabilities are indeed educable! They should eventually be accepted by the Education Ministry. There should be no “discrimination” of children especially if we were to subscribe to the principle of inclusive education as spelt out in the UN-CRPWD and the Malaysian PWD Act 2008.
JKM should focus on welfare issues of the OKUs e.g. disbursement of financial aid and counselling. CBR/PDK under JKM can then concentrate on supporting families and complement services such as toy libraries, home visitations, provision of respite care and group homes.
Summary
The UN-CRPWD and PWD Act 2008 have already dictated the way forward for people with disabilities. Provision of services has to be founded on the rights-based approach in an inclusive society.
The government should consider allocating disability allowances to the individual to enable them to “buy” services. This will immediately empower the clients and their families. It will certainly force market competition which will instantaneously ensure quality service deliveries.
Malaysia does not lack money or models of best practices in service deliveries. Yes, there is a lack of trained personnel because there isn’t enough awareness on the importance and value of these people and their professions. However, many NGOs have proven that quality services can still be made possible despite the lack of funding and professionals. Where there is a will, there is a way. And it has to do with attitudes.
Teaching and training may require academic qualifications and brain knowledge. But caring for people with disabilities, senior citizens, your neighbours, the environment and even animals requires most importantly the right attitude and a compassionate heart.
Khor Ai-Na is Executive Director of Asia Community Service (ACS), while Akemi Utsumi and Terri Faust are volunteers at ACS.The above paper was submitted at a Suhakam roundtable discussion
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