Support parents of disabled kids, experts urge more respite care

 

Children with disabilities must never be viewed as a 'burden', said experts who deal with special needs individuals.

But that doesn’t mean parents with disabled children don’t need help and care for themselves said National Early Childhood Intervention Council (NECIC) advisor Dr Amar-Singh HSS.

He said in other countries, there are respite care services that provide parents and primary caregivers to the disabled with short-term breaks so they can have some time to rest or run errands, among other things.

Such services are often provided by local governments or are government-subsidised in more advanced countries.

“This is a terribly important service," Amar-Singh told Malaysiakini.

"In the past, we had our extended family helping us with this,

"But now - increasingly, since we are a very urban society, this kind of extended family support is not really there for us,” he added.

The struggles faced by many caregivers and their loved ones – who are stigmatised and lack adequate support from existing social safety nets – recently became a hot topic on social media in Malaysia.

This comes after the tragic deaths of two 11-year-old twin boys who were found in a canal in Upper Bukit Timah, Singapore on Jan 21. The twins were believed to have special needs – which were unspecified.

The victims' 48-year-old father, Xavier Yap Jung Houn, was later charged with the murder of one of the twins, Ethan Yap E Chern.

Amar-Singh, who is also a consultant paediatrician, said 15 percent of Malaysians are believed to have a disability, with 2 to 3 percent having severe disabilities that require more care.

Support mandated by law

Despite the numbers, he said publicly-funded support is lacking compared to countries such as the UK and New Zealand, where support for disabled children is mandatory.

“That means the moment you have a child with a disability, no matter what your social class, whether you're rich or poor, you get mandatory support.

“I think that that kind of support is critical, and that is mandated by law there. We need to think about this in our country as well.

“Right now, we only have support for the really poor - the ones who are below the poverty line,” he said.

He added that the first step to supporting these families is to change the practice of viewing people with disabilities with pity or as charity cases - with the media playing a big role in this.

Further, he believed that government and government agencies should stop using the charity model of providing aid to these groups.

“We need a rights model (to say) this is your right. Just like anybody who is poor will need educational support.

“If they need to go to university, the scholarship is just automatically accessible (to) them - which is not in our country.

“So to me, this is a rights issue and we should mandate that these people get support, regardless of where they come from (and) their social background,” he said.

Clearer support system

Meanwhile, Kits4Kids Foundation founder Eric Lim also opined that support for disabled peoples was lacking despite Malaysia being an early adopter of legislation to protect the disabled.

"I have lived in three continents and the support system differs in every country and will never be ‘perfect’.

“Malaysia, although being one of the earliest countries to adopt a Disability Act,  does not provide a clear support system between the Social Welfare Department, nonprofit organisations, and non-governmental organisations, including private organisations," he said.

Lim, however, cautioned the public from assuming that the experiences of families with disabled children could be improved with a one-size-fits-all solution.

"Every family struggle is different from another, whether there is a special needs child or not.

"A family will face (a) similar level of struggle if there were an elderly (person) who needs support or a single parent family constitution.

"While the public and media empathise, don’t assume that every struggle is the same and start to 'advise' counselling or initiatives based on broad brushes," he said.

But despite the challenges, he said a special needs child is just like any other child.

"It’s not a burden, it’s a child. Having a special child is similar to having any other child, only the needs are different and goals are more diverse in their development.

"While there are some that require more support than others it is dependent on each family to seek the optimum for the child," said the educator. - Mkini