Developing skills of people with Down syndrome

We refer to the article ‘Call for the life monitoring for Down’s Children’ (The Sunday Times, August 1). Equal Partners Foundation agrees wholeheartedly with the Down Syndrome Association’s proposal that people with Down syndrome should have the nec-essary healthcare provisions throughout their lifetime.

We believe that where there has long been medical knowledge and awareness of illness tendencies in any group of people, let alone vulnerable people who may have difficulty in communication, a preventive care regime is much cheaper and better than a curative approach.

However, we find objection to the terminology used in the article. We do not agree that people with Down syndrome should be called sufferers. Although they might have health problems, they are people who enjoy life, who are able to learn and develop skills that can lead to independent living.

As a foundation we strongly believe that people with Down syndrome should have access to early intervention from birth, and that this intervention is well structured and very regular to target, along a developmental continuum, the communication, cognitive, physical and social growth of infants and young children (from birth to seven years of age), while giving them a head start to be able to reach developmental milestones. If this service is in place people with Down syndrome would be in a better position to communicate their needs.

Also, it is not correct to keep referring to people with Down syndrome as children. They start in life as children, but like everyone else, they develop into youths, young adults, and adults, and it is important that they are treated and spoken about with age-appropriate terminology. To keep calling youths or adults children is degrading and hurtful.

We are also concerned that there are many other issues that affect people with disability that need urgent attention – post-secondary education, employment prospects, independent or supported living and so many others.

As mentioned in letters to the editor appearing in The Sunday Times of July 11 by Paul Pulis and the reply by Joseph Paul Vella on August 1, the disability agenda is only referred to before an election but seems to be forgotten once the party has been voted to power. It is about time the disability vote is taken seriously.