This article was first published in The Malta Independent on Sunday
This year Down syndrome awareness week in Malta and Gozo will be celebrated between the 16th and the 23rd of March. The theme chosen for this year is ‘My friends, my community – what it means to be included’.
The word ‘INCLUSION’ is a big word and sometimes not rightly understood or interpreted. Inclusion is described as ‘a term used by people with disabilities and other disability-rights’ advocates stating that all people should freely, openly and without pity accommodate any person with a disability without restrictions or limitations of any kind.’
In Malta most children with Down syndrome attend mainstream education from pre-school to secondary years. They attend after-school activities such as museum, sports, arts, dance, drama and many other leisure activities along-side their peers. Invitations to parties and outings are on-going. Considering where we were 20 years ago, we realize that we have come a long way and a lot of opportunities are being given to the children to help them integrate in society. But are we doing it the right way and is inclusion working? The answer to this question is more complicated than it appears at first glance.
What challenges do these young people face once secondary school years come to an end? School leavers can be identified to benefit from ‘The Pathway to Independent Living Programme’. This programme is open for all adolescents with mild to moderate intellectual disabilities. Prospective students need to have a basic understanding of skills in literacy and numeracy, be able to tolerate the classroom environment and be willing to take up employment. Students are supported in acquiring skills needed to gain and maintain employment. Others are admitted at the ‘Wardija Resource Centre’. This Education Resource Centre caters for the needs of young adults, supporting them to acquire better independence and functional skills. Others attend ‘Sapport’ a branch of the FSWS. Here persons continue developing their potential through different types of activities to enhance independent living skills and employability skills. It also provides support to the family so that the person can continue living within the community without being socially excluded or institutionalised. Lately the Lino Spiteri Foundation in partnership with the Employment and Training Corporation (ETC) was set up. It aims to support the training, job-skills as well as on-the-job support of persons with a disability through a dedicated team of experts, coaches and social entrepreneurs. It strives to create opportunities for sustainable and gainful employment through partnerships and social enterprise. This ties up with the stand that the Government has taken requiring companies to increase opportunities for inclusion of people with a disability in the workforce. A few are institutionalized or kept at home.
During childhood the scenario is positive, but as these children grow older the opportunities for inclusion decreases alarmingly. After years of intervention and classroom inclusion are these young adults being given the same opportunities that other young adults are given to be able to become active contributors to society at large? How many of them gain meaningful employment, how many are living independently, how many are going out with their friends, how many have steady relationships? So we have to ask ourselves the question ‘How well are we preparing these individuals for inclusion in society? Why does it end with school for most of them? How can we better prepare them to make this happen?’
To understand better how we can create positive inclusion, we must first look at how the syndrome affects the individual from birth to adulthood? How can the person be ‘included’ and most importantly how can we prepare the individual for ‘inclusion’?
Children with Down syndrome are born to different parents irrelevant of race, religion or economic backgrounds. The only common thing that they all have is the extra genetic material on their 21st chromosome that will impact the child’s development and abilities. All individuals share some common characteristics but, personalities, development and needs vary significantly. Some are quicker to learn and acquire skills, can relate to others, have an easy-going pleasant disposition and health problems are insignificant. On the other hand some may have very significant learning difficulties, some may be shy or anxious, whilst some may exhibit challenging behavior and be more difficult to manage. A small number of children may also experience autism or attention deficit and hyperactivity disorders. Some children may have more complex needs and additional medical complications that can be the cause of greater difficulties in their overall development, irrelevant of the care, therapeutic and educational intervention that they benefit from.
Unless each individual is looked at as a person not as a ‘label’ inclusion is very difficult. We must know the persons well, know what challenges them – any health concerns, communication difficulties, social experiences, the level of education attained. We must also know the persons’ strengths and weaknesses, things he likes and dislikes, his circle of friends if any and leisure activities he enjoys and is good at. With this knowledge in hand, inclusion is possible as things can be planned to support these individuals according to their level of ability, understanding and most important of all to their liking. The family also plays a very important part in the person’s formation and education. From day one the baby, child, adolescent and later the adult must feel that he is a valid member of the family. Allowances can only be made for those things he is physically and mentally unable to cope with. He must however learn to abide by rules and know that there are consequences. Independence is also an issue that most parents and professionals need to consider. Over dependency, passivity and social exclusion are the cancer that is eating away at all chances of inclusion. The right kind of education is also important as for it to be effective it must be one that educates and not just teach the person. Only if we support these individuals in all these areas can they become valid members of society that can contribute to the community like any other human being.
To help raise more awareness as well as celebrate DSAW, Inspire will be organizing various activities between the 16th and the 23rd of March. The theme chosen for this year is ‘My friends, my community – what it means to be included’.
For more info visit www.inspire.org.mt
Inspire the Foundation for Inclusion: Bulebel / M’scala / Gozo Tel: 20928100 / 21636526 / 21558941
Email Malta: firstname.lastname@example.org / Gozo: email@example.com
Adults Down syndrome Clinic B’Kara. Tel: 2149 4960, 2123 5158 or email firstname.lastname@example.org
Down Syndrome Association. Tel: 2123 5158 or e-mail: email@example.com