Amongst all my activities, I try to meet reasonably regularly with a range of community organisations to help keep me in better touch with some of the issues at community level. Even if there is no immediate issue I can assist them with, it is always useful for me to get a better understanding of their activities and concerns, and to get more aware of the specific matters their organisation works on.
I met recently with a representative from the Down Syndrome Association of Queensland (DSAQ). Last year marked the 30th anniversary of their founding. Like many not-for-profit groups who have been around for a while, the environment in which they work has changed considerably. The dilemmas of volunteerism versus professionalism, the choices and consequences involved in deriving funds from private donations, corporate sponsorship or government funding and the issues like increased accountability requirements (and potential liability costs) are all very different for many community based groups compared to 10 or 15 years ago.
But one thing that hasn’t changed has been the need to increase public awareness and understanding about many of the issues these groups work on. Like many things in life, unless you are directly touched by an issue, you often don’t know much about it. Much of the information below has come from people who have lived with and cared for people with Down Syndrome.
Every week in Queensland, at least one baby is born with Down Syndrome. Thirty years ago, when the DSAQ was formed, families were often encouraged to institutionalise children with Down Syndrome. There was minimal access to education and limited health care. Life expectancy for such children was much less than now. This report cites a US study which found it had increased from 25 years of age in 1983 to 49 years in 1997. I understand it has continued to increase since then.
There are more facts at this link. “All children with Down Syndrome have some degree of intellectual disability, although this usually falls within the mild to moderate range. A delay in developing milestones is common and children have difficulty learning. However, they can and will learn.”
One refrain I regularly hear from a range of different community groups that work on disability issues is the failure of education system to adequately assist and work with children who are different from the norm. I appreciate it can be difficult to fully meet the needs of children, let alone the expectations of parents, but if there is any time when it is worth putting in maximum resources, it is in the development years of children. The benefits gained from the extra support in the developmental stages will pay off for the entire community down the track.
A person with an intellectual disability should have equal access to health, education and employment, and should still be able to live a fruitful life. People with Down Syndrome may share a disability, but they still have unique personalities, abilities, skills and interests. The impact of their disability often depends as much on community attitudes and support as it does on an individual’s level of ability.