Staggering differences
My heart goes out to Margaret Chung and Kat Thomas who are raising children with disabilities (“Shut in & burnt out”, November 20). The lack of resources/funding, absence of political affirmation and paucity of community support have been ongoing issues since the 1990s.
In the 1990s, I was a service reviewer for disabled children on both sides of the fence, ie, Ministry of Health-funded and Accident Compensation Corporation (ACC). I discovered the difference in quality and access between the two was staggering. Children and their parents receiving resources from ACC got all the bells and whistles whereas MoH-funded children with the same symptoms caused by genetic malfunction were definitely the poor relations.
Ministry-funded children lacked access and resources, which put a huge strain on their parents, with a very high divorce rate the end result. Often, the children were being raised solely by the mother. As one mother said to me, as she looked at her very physically and intellectually disabled son, “I go to bed exhausted at night and when I wake up in the morning, I know it’s never going to be any different.” The sound of her crying lives with me still.
Unfortunately, locking children up in institutions prior to 1990 led to a community that fostered “out of sight, out of mind” thinking, and subsequent attempts at normalising disability in the community have not been easy or acceptable to some.
I strongly
