Inclusion

In this light, the Down Syndrome Family Network (DSFN) wishes to engage all citizens in its planned activities celebrating the United Nations, March 21 World Down Syndrome Day 2014, in Trinidad and Tobago, at which time DSFN will be hosting its third annual conference to recognise this occasion.

Because of the geographical situation in these two islands, the conference will be held at the Magdalena Grand Resort in Tobago on Friday (March 21) and at the Hyatt Regency Port-of- Spain on Saturday (March 22), and will be open to members of the network, NGOs, education, health and other professionals that support the families of persons with Down syndrome as well as the general public.

The conferences aim to demonstrate the possibilities of an inclusive environment through keynote speaker, David Egan, of Washington DC, a self-advocate and Special Olympian; and special guest speaker, Carole Janine Guess, vice-president of the US National Down Syndrome Congress, both being brought here by the DSFM, under the leadership of founder and chairman Fitzherbert Glen Niles, himself the father of a now 15-year-old child with Down syndrome.

Two workshops have also been arranged for self-advocates and one for junior self-advocates – young children with Down syndrome, because, says Niles, “Parents have to stop thinking of their child as being special because that prevents them from allowing the youngsters to partake in certain activities that will allow them to progress because they think that they won’t be able to. So here is a chance to use the self advocate programme while parents attend the conferences.”

Niles defines “inclusion” as “teaching students with disabilities in regular classrooms, rather than in special classes or pull-out sessions. Mainstreaming is placing disabled students in only a few regular classes throughout the day, such as art or physical education, not the academic subjects.” And explains that, “Inclusion in the near future depends solely on the parents as they have to speak out and fight for the rights of their children. It is not supposed to be at the whims and fancies of schools as to who will attend their school, everybody is supposed to have an equal opportunity, that’s their right as citizens of Trinidad and Tobago. So it must be mandated by the Ministry of Education that all schools from early childhood to university accept children with disabilities which will at least give them the opportunity to rise to those standards, from which they will progress further and further.”

Keynote speaker David Egan is an enthusiastic advocate for people with intellectual disabilities. He was born in Madison, Wisconsin, USA in 1977 and moved to Virginia in 1984. From the age of eight, Special Olympics played a big part in David’s life, inspiring him to grow and excel in both individual and team sports. More importantly, Special Olympics instilled in him the desire to give back to the community, which he does as a Special Olympics Global Messenger, an active adviser in the Athlete Leadership Programme, and a mentor for younger athletes. He also served as a board member for Special Olympics Virginia (SOVA) and Special Olympics International (SOI), travelling to various countries to promote the organisation and spread the “dignity revolution.”

David is proud to have a competitive job as a clerk in the Distribution Center at Booz Allen Hamilton in McLean, VA, where he started working in 1996 as a high-school intern, and because of his initiative and the company’s interest in inclusion, quickly transitioned to a clerical staff position. As an active advocate for people with intellectual disabilities, this comparatively young man currently serves as a board member for Down Syndrome Affiliates In Action (DSAIA) and the Down Syndrome Association of Northern Virginia (DSANV), and is also an ambassador for the National Down Syndrome Society (NDSS).

Speaking at local, national, and international events, Egan shares his story, builds awareness, inspires people, and thanks supporters for their advocacy for people with intellectual disabilities. In 2010, he provided compelling testimony to the United States Senate’s Health, Education, Labor, and Pensions (HELP) Committee, which convened the first in a series of hearings to examine how to improve employment opportunities for people with intellectual disabilities by emphasising that “employing people with intellectual disabilities is a smart business decision and a social responsibility.”

On World Down Syndrome Day 2012, at the United Nations, Egan spoke passionately for the human rights of people with intellectual disabilities from all walks of life, focusing on respect, dignity, and inclusion. In his outreach efforts, he cares about dispelling myths and stereotypes, advancing research efforts, and creating a network of supporters. He strives to build a broader community to improve education, healthcare, opportunities for employment, and quality of life to ensure that no one person with Down syndrome is left behind. People with intellectual disabilities should be given the opportunity to reach full potential, and Egan wants to ensure that their voices are heard: “nothing about us without us.”

Guest speaker Carole Janine Guess of Indianapolis, Indiana, the mother of a nine-year-old son living with Down syndrome, is an IT Audit Programme Manager, Audit and Compliance Services at Indiana University Health. She holds the Bachelor of Science in Developmental Psychology and Early Childhood Education from Indiana University Purdue University Indianapolis (IUPUI); Masters of Business Administration and Masters of Science in Accounting both from Kelley School of Business, Indiana University. Guess is a Certified Information Systems Auditor (CISA), Information Systems Audit and Control Association, is certified in Risk and Information Systems Controls (CRISC) Information Systems Audit and Control Association, and holds ITIL Foundation Level Certification in IT Service Management,

Being the mother of Evan, has inspired and compelled Guess to found the Minority Families Down Syndrome Network – an international network of parents, self-advocates and professionals who mentor, share knowledge and advocate at every given opportunity that arises. She also serves in a number of capacities – as a board member and officer of the National Down Syndrome Congress; as the State Superintendent Of Public Instruction’s appointee to the Indiana

Department of Education Council on Special Education; as a board member of The Arc of Indiana; on the Health and Wellness Committee of The Arc of Indiana, as a presenter, trainer and/or consultant to local and national disability organisations on issues of, related to diversity and inclusion (race, ethnicity and other under represented populations) within the disability community; and as a resource for local educators and parents on inclusive education and curriculum modification strategies. She also chairs and serves on committees of Down Syndrome Indiana and has developed an inclusive model for local martial arts programming.

“Evan is the absolute best thing that has ever happened to me” says Guess. “Everything about him makes him who he is. He has such a gift — he changes the lives of everyone he interacts with. The kid is a game changer for sure. I could not have been more blessed. I advocate on behalf of individuals with developmental disabilities because of him. I see what is possible for each and every one of them, and I am bound and determined that they get a fair chance, an even playing field to be successful,” she said.

The deadline for registration for the conferences is tomorrow (March 19). Registration forms are available at www.dsfamilynetwork.org or DSFN Office, Unit 2, 18 Valpark shopping Plaza, Valsayn. For further information call 663-0865 or email info@dsfamilynetwork.com.