News : Malaysian Care Supporting families for child with disability or complex needs

Excerpt from STAR ONLINE

Shared care

Opening your home to a person with a disability for a few hours a week or an overnight stay can be a mutually enriching experience and can change lives in profound ways, writes VICTORIA L. PARKER.

CARING for a child is not an easy job, especially when the child has a disability or complex needs. As the child grows, so does the parent's ever-increasing job specifications. Parents become professional jugglers of time: they learn to balance giving their child with a disability the support he needs, working, running a household and being there for their other kids. Unfortunately, somewhere along the line, something has to give.

Shared Care Schemes have been a life-line support system for many families all over the world. Informal groups of families are already implementing the concept here in Malaysia. Supporting families for a few hours a week by taking their disabled children swimming, to the park and having them over for dinner or for an overnight stay is all it takes.

While I was working in England as a specialist community nurse, I introduced Jane, a single mother, to the concept of Shared Care. Jane had two children, a daughter Kelly, 14, and son, John, 10. When John was four, he was diagnosed with autism and epilepsy. He had very limited self-help, socialisation and communication skills and was not his happiest when there were changes in his daily routine.

When Jane first considered the idea of Shared Care, she was sceptical until she met Carol and Jack, and their two sons aged eight and 11, and their dog Jasper. They had just become Short-break carers in the local Shared Care scheme. Carol had some experience with epilepsy but knew very little about disabilities.

Welcoming a disabled child into your home can bring countless benefits.Initially Jane, John and I would drop in at Carol’s house for tea on a regular basis and Jane would explain to Carol different aspects of John’s needs. She then started to leave him alone at Carol’s house for a half-day visit once a week. Slowly John and Carol built up a relationship and soon John was staying overnight every couple of weeks. In the beginning they had their rough patches; it was a learning curve for both families, and especially for John.

Interacting with new people in a new environment was extremely stressful for John. There were many frantic phone calls from Carol, as John would scream and bite himself for hours on end. One of Carol’s neighbours even called the police once as they thought she was abusing her children! We got all the neighbours together and explained the situation and eventually they became very supportive of Carol.

John occasionally had severe epileptic seizures. Carol’s husband, Jack, found them very distressing until he understood how to manage them. Slowly John settled in and Carol learnt to read what John needed, to make him feel safe. After six months it was as if John had a second home.

Carol and her husband grew very fond of John, and when John came home after his visits, he smiled continuously until he went to bed.
Jack thought it was a great experience for his family, having John stay with them. His sons learnt more about disabilities and if any one stared at John or called him names, the boys would put them in their place.

The nights that John stayed over at Carol’s place, Jane would go to the cinema or go shopping with her daughter Kelly and focus all her attention on her. Unfortunately, one of the areas of family life that has got to give is time spent solely with other children in the family.
They had been having problems. Kelly was rude to her mother and stayed out late. After John was placed in a Shared Care scheme and stress levels in the family had eased, Kelly admitted that she resented her brother getting all the attention. The time they had alone was a great opportunity for Kelly to relax and open up. The relationship between the siblings improved too.
The most positive outcome of the Shared Care Scheme was the progress John had made. He had become more independent, could dress himself and eat with improved table manners.
His socially inappropriate behaviour had diminished considerably and he began vocalising a lot more. John had rarely spoken in the past and failed to show he recognised his family members or anything in his environment. As Jane said, her jaw dropped when she was in the garden with him one day and in the distance a dog barked and instantly John ran to the garden fence and shouted: “Mummy dog Jasper!” It had been a struggle for both families in the beginning but with that one sentence, all the hard work had been worth it.

In many countries, shared care within a family or facility provision is a statutory requirement. Over the years there has been endless research carried out in Britain, the United States and Australia on Family Linked Short Break Care, or the favoured term at the moment – Shared Care.

Shared Care or Family Link Care is immeasurable in the benefits to the families and child involved. It’s a form of family support that can change the lives of families with disabled children in profound ways. It breaks down barriers and inadvertently brings about positive awareness of disabilities.

Shared Care opens up endless opportunities for disabled children and adults to have new experiences. At the same time, it gives families a break to do the necessary things.
Every family does things differently, even if the cultural and religious aspects of their lives are similar to others in the community. Their day-to-day routines, interests and relationships are different.

When a child with a disability spends time with another family, he is exposed to all these new things and in the long run, the more exposure he gets, the better it is for him. Our daily life experiences increase our cultural understanding: we learn society's rules, problem-solving, and social and communication skills.

The opportunities for a person with a disability are endless. John grew immeasurably from being part of Shared Care, as did Jane and Carol and their families. Supporting people is not just a “charity” activity. It’s about opening your home to another human being and promoting mutual understanding.

Dignity & Services has initiated forums on why and how Shared Care could be implemented in Malaysia. Any family with or without a disabled family member, who would like to know more or be involved in a local Family Linked Shared Care Scheme, can contact Dignity & Services.

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 dignity@tm.net.my.

For enquiries, call Malaysian Care ( 03 90582102) or Dignity & Services ( 03-7725-5569).

[tags : seic epilepsy seizures children pediatric neurology]