Family-centred solutions for the learning disabled12 January 2011
By PANG HIN YUE
FAMILY dynamics play a critical role in determining the quality of life of the learning disabled. In Ireland, it has been found that when families become overly-reliant on the system to provide services for the learning disabled, many of them leave school unqualified, unemployed, live dependently, have few friends and little prospect of finding partners.
“This has been going on for the past 20 years,” observes Professor Roy McConkey of the University of Ulster, who has been working with the learning disabled community for more than 40 years.
While the welfare of the learning disabled in developed countries has improved over the years as parents fought for better services, at the micro level, the quality of life of individuals with learning disabilities still depends very much on the functioning of the respective families.
“The focus had been on the affected child but experience suggests that we (professionals) need to move in the direction of helping the entire family,” says McConkey at the 3rd National Early Childhood Intervention Conference 2010 held in Malacca last month.
The three-day conference was organised by a coalition of NGOs, including Wings Melaka, Association for Children with Special Needs, Malaysian Care and the National Autism Society of Malaysia.
Poverty, poor health of the primary caregiver (in many cases, the responsibility lies squarely on the mother), stress and marital problems with little or absence of informal support, can aggravate the child’s challenging behaviour, says McConkey.
“Single parents have a tougher time and it is compounded by higher stress levels, all of which affect the child’s well-being,” adds the professor of developmental disabilities at the University of Ulster’s Nursing Research Institute in Northern Ireland.
In his studies conducted in three nations, namely Ireland, Taiwan and Jordan, on family functioning, McConkey found a similar trend despite the cultural differences. “A good family (that is, no marital strife and has support from relatives, friends and the local community) does better in helping the child’s growth,” he observes.
In Ireland, he says, 65% of families impacted by learning disabilities receive informal support in the following order: parents, friends, neighbours and church. They fare better than those who get very little help.
As such, there must be a shift towards providing family-centred services.
“A proliferation of experts that focuses only on the affected child can be confusing and overwhelming. Training should involve key members of the family. With training, family functioning improves and with that, the special needs child receives better care,” says McConkey.
“If we can bring families together, there is tremendous opportunity to learn from one another and share information. Families can do a lot more to help themselves when they rally behind one another, rather than being dependent solely on experts,” he adds.
Australian occupational therapist Cathy Love, concurs. She says convention dictates that special needs children with poor motor skills be trained to manipulate specially designed gadgets to strengthen their muscles.
“A lot of these exercises can be done at home, using everyday utensils. For example, if a child has problems holding a spoon, then the parents should just get the child to practise gripping the spoon. There’s no need for fancy gadgets,” she explains.
On the medical front, health experts could do well if they learn to be more people-friendly and empathic when dealing with parents with special needs children, says Datuk Dr Amar Singh, senior consultant paediatrician (community) and head of the paediatric department at Hospital Raja Permaisuri Bainun Ipoh.
Traditionally, the training doctors receive emphasises cure-and-fix solutions which dehumanise the relationship between doctor and patient, he observes. As such, when doctors are presented with patients who have chronic disorders such as those with disabilities, more often than not, they are unsure what to do.
He notes in his presentation at the conference that most parents struggle to accept the diagnosis of their child’s disability by a medical practitioner. “Often there is the classical grief response of shock, denial, anger and depression before acceptance comes,” he observes.
The process is traumatic but he says it can be mitigated by how a doctor supports the parents at the time of the diagnosis.
“Healthcare professionals first need to deal with their own outlook on disability and understand how parents respond to the challenge of having a child with disability,” he adds.
In calling for a more holistic approach, Dr Amar who has been instrumental in mobilising the Health Ministry to improve child healthcare services, urges doctors to take the initiative to gain access to resources that can support parents as they overcome their grief before they can help their child with the necessary interventions.
“Disability services remain limited locally and will not improve dramatically unless parents and healthcare professionals team up as advocates to pressure the government to allocate adequate resources,” he says.
Like other professionals who have a heart for the learning disabled, Dr Amar believes it is family support and love that will ultimately help a child with special needs to grow and reach his full potential.
> One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to email@example.com. For enquiries of services and support groups, please call Malaysian Care ( 03-9058 2102) or Dignity & Services ( 03-7725 5569). E-mail: firstname.lastname@example.org.