Thursday July 16, 2009
A brighter home
IMPROVING the long-term quality of life of the residents at Taman Sinar Harapan in Kuala Kubu Baru, Selangor, is a complex issue and involves financial and moral commitment by both the government and the community.
The 84 attendants who turn up to work each day in such conditions, are to be admired. They have not created the situation and have little power to change it.
The situation at Taman Sinar Harapan in Kuala Kubu Baru, Selangor, has altered very little since it was established in the early 1980s. At that point, someone made the fatal decision to move all the severely disabled residents from the Taman Sinar Harapan homes around the country to Kuala Kubu Baru where they were housed in a rundown building once used as a rehabilitation centre for drug dependants.
For a week each month for a number of months in the early 1980s, I lived at the centre with another volunteer and worked alongside the staff. We shared and demonstrated ideas with them and the then director.
We encouraged the local community to volunteer and become involved. We tried to demonstrate how to care for and encourage positive behaviour and stimulate learning among the residents.
Any gains were short-lived for a number of reasons including:
> the unrealistic staff to resident ratio
> the lack of trained personal
> the lack of money for equipment
> the isolation from the community
> the lack of awareness of the potential of the residents.
Taman Sinar Harapan has hit the Press before, but the devastating reality for those living there is that it soon becomes old news. Floors are polished (new tiles laid), new clothes and toys are bought, curtains hung and a number of heads banged if not rolled, but the reality of day-to-day life does not change for either the residents or for those who work there.
I believe lasting change within the existing set-up is almost impossible to sustain.
What is the solution? I see short-term and long-term solutions.
The responsibility and solution lies with us as a community and with those who work and make decisions at government level.
We must lobby for:
> Malaysia to catch up with the rest of the world. Over the last few decades, governments world-wide have moved to relocate people with disabilities away from such institutions to live either:
a) back with their family, where no matter how disabled they are, they have access to government-run day schools/centres/workplaces. Such families are then supported with short-term respite care where the family can take short breaks from caring for their family member who is disabled, or;
b) in small group homes in local houses in the community staffed by trained workers where they also get to attend programmes during the day.
> A realistic staff-to-resident ratio wherever people with disabilities are cared for. For some with severe behaviour, physical and intellectual disabilities, this may mean a 1:2 or 1:3 ratio.
> A quality of life for people with disabilities which includes education, rehabilitation and integration into the community and not just care.
The long-term solution for Taman Sinar Harapan centres across the country is to disestablish them and set up smaller community-based centres and services.
Taman Sinar Harapan in Kuala Kubu Baru did begin this process back in the early1990s, by establishing one group home for the more able.
There needs to be a task committee set up to plan and begin this process. This committee should consist of people from the various government departments involved, together with experts from NGOs, some of whom are already running successful programmes in the community.
> Keep the issue on the agenda and in the public eye.
> While Taman Sinar Harapan remains in its present state as an institution, it should be looked upon as a quasi hospital and afforded more medical attention. Appoint at least one full-time doctor with an understanding of intellectual disability and cerebral palsy, and an additional six nurses to be based at the centre.
> Secondment of a small team of people from the government and NGOs who are experienced in working with children and adults with multiple disabilities, including intellectual disabilities, cerebral palsy and autism. Malaysia has many people with such skills who can make a real contribution if invited, but these people must be based at the centre working together with the attendants, those in charge and with volunteers from the community.
> The initial brief of the team of medical and experienced workers should be to conduct a thorough health check and assessment of each individual resident to diagnose the person’s disability and to check on any medical conditions.
Medical conditions commonly seen in people with intellectual disabilities include eye conditions, hearing loss, dental disease, epilepsy, psychiatric disorders and behavioural problems.
> Given the state of the centre, the medical staff will also be able to assess for skin diseases and malnutrition which may be evident.
> Individual health and rehabilitation records need to be documented and updated as assessments are completed and followed up.
Many children/adults with multiple disabilities require specialised feeding to help them maintain their health and well-being. This requires a high staffing ratio, especially at meal times. Many of the residents are not toilet-trained. With the existing staff ratio, such training is virtually impossible. One can understand the logic of the attendants leaving the residents naked.
> Increase the number of attendants to at least a 1:5 ratio on any daytime shift and a 1:10 ratio on a night shift. Give the medical and seconded team the responsibility of providing daily job descriptions and on-the-job training for all staff.
> Provide separate places equipped with stimulating activities for all the residents to go to during the day so they are taken out of their cots. This should not just be confined to a large room but to a number of smaller rooms where residents can be grouped according to their educational and rehabilitative needs.
Often after such bad press, the temptation for those in charge is to be very wary of visitors and to take a cautious approach to letting people visit. I say be brave, open up your doors to anyone who is willing to visit or volunteer help. Find them one child or one adult in the centre and get them to take that person on as their special person. The responsibility of caring for the weakest members of our society lies not just with the government; it is with the whole community.
I believe not all residents, when they were brought to Taman Sinar Harapan, were abandoned or roaming the streets. Many will have had desperate families who are struggling to cope with their child at home.
Well-meaning welfare officers around the country will have pushed for them to gain a place in a government home as a solution.
Community-based rehabilitation has been a major thrust of the Welfare Department for a number of years. The Malaysian Education Department has pushed hard to establish special classes within mainstream schools.
These programmes should be expanded, refined and developed for all children with disabilities, even the severely disabled, and this is where families should seek help. There will always be abandoned children with disabilities.
On a personal note, I have had deep emotions – ranging from guilt to anger to despair – and even nightmares about this centre for many years.
The writer, a speech and language therapist, and trained teacher, has worked in Malaysia in various centres for the disabled from 1983 to 1993.