This article was first published in The Times of Malta
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’.
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 realizing the rights of all individuals with a disability in the homes, schools, workplaces and the community at large. Their right to benefit from health schemes relating to their concerns, proper education, gainful employment, advocacy and environmental accessibility where this is 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 the 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 of inclusion. We must understand how the syndrome affects the individual from birth to adulthood?
Children with Down syndrome all 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. Whilst 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 behavior. Sometimes these complications can be the cause of greater difficulties in their overall development, irrelevant of the care, therapeutic and educational intervention that 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.
But 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.
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 to include psychologists, physiotherapists, speech therapists and occupational therapists is recommended throughout.
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 does not equal over-protectiveness. This hinders progress and independence. All persons learn because they are included in everyday family experiences both in and outside of the home. The person, from a young age should be included by exposure to everyday situations like supporting with chores, having responsibilities, taking decisions, making choices and participating at all outdoor and social activities. Learning to show respect, following rules set, accepting consequences and knowing that everyone can make mistakes. These are important ideas that need to be taught in context.
Throughout the school years support needs to adapt the curriculum to the child’s level of understanding. LSAs need to find a balance between supporting and bridging the gaps when required to do so. This allows room for independence as opposed to adopting the velcro-method that only teaches learnt helplessness. 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.
Throughout the school years individuals together with their peers need to be introduced to sports, hobbies, leisure and extra-curricular activities. Maintaining friendships of similar peers is also important. These friends will most likely be those peers met with throughout post-secondary and vocational training years. 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 in the community. The presence and participation at these activities will help the individual become more known and accepted within the community.
At the work place
- 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!
Important contact numbers
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