This year, Down syndrome awareness week in Malta and Gozo is being marked between tomorrow and March 23. The theme chosen for this year is ‘My friends, my community – what it means to be included’.
But what do we mean by ‘inclusion’? Inclusion is about valuing all individuals, giving equal access and opportunity to all and removing discrimination and other barriers to involvement. It is described by some as “the practice of ensuring that people feel they belong, are engaged and connected”.
For the past 20 years Malta has been working at realising the rights of all individuals with a disability in homes, schools, workplaces and the community at large. This means they have the right to benefit from health schemes relating to their concerns, proper education, gainful employment, advocacy and environmental accessibility when required.
A positive scenario is seen for children with Down syndrome. However, after years of intervention and classroom inclusion, a decline in opportunities for young adults to become active contributors to society at large can be noted. How many adults gain meaningful employment, how many are living independently, how many are going out with their friends, how many have steady relationships? Why does it end with school for most of them? If this is not happening, why is it not happening and how can we prepare youngsters to make this happen?
When we talk about inclusion, we have to understand what the challenges are and how we can bring about a change that will support this idea fully. We must also understand how the syndrome affects the individual from birth to adulthood.
Children with Down syndrome have different personalities, they develop in different ways and their needs vary according to their level of performance and understanding. The extra genetic material on their 21st chromosome causes them to share the common characteristics that affect their development and abilities. While some are quicker to learn, have a better health disposition and are very sociable, others may have significant learning difficulties, be shy or anxious and some may exhibit challenging behaviour. Sometimes these complications can be the cause of greater difficulties in their overall development, irrelevant of the care, therapeutic and educational intervention they benefit from.
The following characteristics are experienced by persons with Down syndrome in varying degrees. These include:
• Learning difficulties;
• Various health concerns;
• Difficulty in learning to talk;
• Hearing and / or vision problems;
• Delayed motor skills [both gross and fine];
• Difficulty with learning from hearing only;
• Difficulty with number skills.
Nonetheless, most individuals with Down syndrome:
• Have good social interaction skills that can be age-appropriate if encouraged;
• Learn through imitation by watching and copying other people;
• Have very good reading skills;
• Learn through pictures;
• Make good use of gestures as well as facial and body language to communicate;
• Understand much more than they can express.
So how can we help persons with Down syndrome achieve their potential? We need to understand their strengths, weaknesses and challenges.
Health concerns
These need to be identified and treated immediately and effectively. Ongoing screening is indicated from birth to adulthood. In Malta, persons with Down syndrome are monitored throughout life by the national health scheme through CDAU, Children’s Out-patients at Mater Dei and the Adults Down Syndrome Clinic. Monitoring by different professionals including psychologists, physiotherapists, speech therapists and occupational therapists is recommended throughout.
Family support
The immediate and extended family need to look at the person first. The syndrome is a part of his/her life but the person is an individual first and foremost. An early intervention programme should be implemented once the condition is diagnosed.
Recommendations given by the early intervention team will give the family the tools to provide the child with functional ongoing support. Support, however, should not be mistaken for over-protectiveness as this may hinder progress and independence. All persons learn because they are included in everyday family experiences both in and outside of the home.
The person should be included by exposure to everyday situations like supporting with chores, having responsibilities, taking decisions, making choices and participating in all outdoor and social activities. They need to learn to show respect, follow rules set, accept consequences and know that everyone can make mistakes. These need to be taught in context.
Education
Throughout the school years, the curriculum must be adapted to the child’s level of understanding. LSAs need to find a balance between supporting and bridging the gaps when required to do so. Students who are skills-challenged can learn by working alongside their peers through copying, imitation and practice. They should learn to abide by the rules, learn to make good and bad choices but then also learn to expect consequences that should be immediate. Adaptations can look at allowing more time and supporting auditory direction with visual cues. It is also recommended that the adolescent is supported in understanding his condition and its effects.
Students with Down syndrome will take longer to learn and mature, so more time needs to be invested in post-secondary education. Education at this stage needs to focus more on functional, daily living and employability skills. This will further enhance chances of gainful employment once adulthood is reached.
Community
Throughout the school years, individuals, together with their peers, need to be introduced to sports, hobbies, leisure and extra-curricular activities. Maintaining friendships with similar peers is also important. Inspire’s Adults’ Programme Social Club and the Down Syndrome Association offer opportunities for this. Meeting up for extra-curricular and after school activities at this point is necessary to help the individual lead a fulfilling life in the community. The family needs to look into different opportunities that support this integration. The presence and participation at these activities will help the individual become more known and accepted within the community.
At the workplace
Following educational preparation, individuals must now be supported to fulfill their roles at the workplace. Individuals need to be introduced to different work experiences before they can make any decisions to identify an enjoyable and stimulating job that is at their level of functioning.
To succeed in the job-role their employers and colleagues need to acknowledge the person not just the syndrome. They need to be aware of any underlying health conditions, any adaptations required in the environment to help meet the person’s needs, how the person communicates and interacts with others and the coping mechanisms adopted when experiencing stress and anxiety. Hygiene, grooming and transport needed are also imperative to help inclusion in the workplace.
The individual with Down syndrome must also be taught and reminded [visually if needed] about rules and consequences, instructions and practice in moving around the workplace, respect and active participation as opposed to helplessness and depending on others. An immediate mentor / supervisor must be identified and the person needs to know who to ask for help when this is needed. The person also needs to be included in extra-curricular activities at the workplace.
Inclusion can happen but for it to happen we must all work at it and support these individuals to be an integral part of our life, as is their right after all!
• For more information contact Inspire at Bulebel, Marsascala and Gozo on 2092 8100, 2163 6526 and 2155 8941 respectively, or send an e-mail to Jonas.schrader@inspire.org.mt or: ann.camilleri@inspire.org.mt (Gozo). The Adults Down Syndrome Clinic at Birkirkara can be reached on tel: 2149 4960 or 2123 5158 or by e-mail at dsc.mfh@gov.mt. The Down Syndrome Association can be contacted on 2123 5158 or via e-mail at info@dsa.org.mt.
Rosette Gatt is an adviser at Inspire Foundation.