Empowering Lives: Insights from Emirates Down Syndrome Association – Dubai

 

 

Ms. Safeya Al Safi, Board Member, Emirates Down Syndrome Association – Dubai

 

 

Down syndrome is a genetic condition that is not hereditary nor is an illness. It occurs when an individual has an extra copy of chromosome 21, making a total of 47 chromosomes in their cells instead of 46.  It is the most commonly occurring chromosomal condition being universally present across all racial, socioeconomic lines or genders. It causes varying degrees of intellectual and physical disability and associated medical issues. One to every 700 live births are affected with Down syndrome worldwide. Due to the advances in medical diagnosis and treatment of individuals with Down syndrome and the changes in social attitudes, people with Down syndrome are living longer, meaningful and fulfilled lives, with an average life expectancy of 60+ years. Although the main reason behind the extra chromosome is still unknown, advanced maternal age is a known risk factor for having a child with Down syndrome. Down syndrome has 3 types; Trisomy 21 (most common), Translocation (less common), and Mosaic (least common), but, regardless of the type of Down syndrome, individuals with Down syndrome share some common physical and developmental characteristics. While they may face certain developmental challenges, they also possess unique strengths and talents. With appropriate therapies, training and support, children with Down syndrome can excel in many areas such as; social skills, communication skills, gross motor skills, musical and artistic talents, adaptive skills, and computer and technology skills. Emirates Down Syndrome Association (EDSA) has been working towards directly serving more than 656 beneficiaries by offering them a range of essential services including; family counseling, early intervention services, allied services (speech therapy, occupational therapy, physical therapy, behavioral therapy), educational habilitation classes, pre- vocational training, vocational training, sustainable projects, employment opportunities, and recreational programs aiming to provide unwavering support, ensuring that children with Down syndrome are empowered to develop their unique strengths, overcome challenges, and flourish, thus enabling them to embrace a future filled with opportunities, achievement, and fulfillment.

 

1. Please tell us something about the Association and share insights into the specific programs, services, and activities offered at the Emirates Down Syndrome Association. How do these initiatives directly impact the lives of individuals with Down syndrome?

The association was established and accredited by the Ministry of Community Development in 2006 to provide quality services for individuals with Down syndrome of all ages and nationalities.

Since its establishment, the association has directly served 656 beneficiaries, offering a range of essential services such as early intervention,family counseling, special education, behavior modification, educational habilitation classes, vocational training classes, and allied services.

The association has also initiated several sustainable projects, such as:

The Emirates Down Syndrome Hospitality Academy “The Creative Kitchen,” which provides professional training for people with Down syndrome in the field of cooking and hospitality.

What’s noteworthy is that participants undergo an academic program at the Emirates Academy for Hospitality Management, the first of its kind in the country, where 3 courses were adopted, and they received theoretical and practical training from experienced professionals at prestigious hotels. 

We also have:

  • Photography Club
  • Computer Club
  • Sewing Atelier
  • Robotics and Artificial Intelligence Club
  • Creative Arts Club
  • Health Club to promote health, fitness, and a healthy lifestyle.

These projects help them enhance their skills, unlock their hidden potentials, and ensure their active participation and full inclusion into society.

Additionally, the association provides sports programs, organizes national tournaments, and participates in local and international competitions.

The people with Down syndrome Self-Advocacy Team is also the first of its kind in the country, allowing them to express themselves and communicate  effectively.

2. Could you highlight some success stories or significant accomplishments by the members of your association/children with Down syndrome?

The rehabilitation, training, empowerment, and inclusion are considered the cornerstone of the services provided at our association to empower people with Down syndrome to become active members of our society and contributors to its development because they are capable, creative, and accomplished when provided with an inclusive environment.

The association follows a clear methodology for employment and communication with public and private sector entities to facilitate the employment of people with Down syndrome, understand the job requirements, and adapt them according to their professional interests and abilities. Additionally, the work environment is assessed to ensure its suitability, and co-workers are trained on how to interact with them. Furthermore, the association provides ongoing technical support is provided after recruitment until full job stability is achieved.

The association hires at least (2) individuals annually, and many of them have been employed, in addition to sustainable projects that serve as empowerment for their inclusion into the job market.

Furthermore, the association actively participates in local and international sports tournaments and has achieved many medals and top rankings in many competitions.

The association plays an active role in enhancing the educational integration process, leading to the successful integration of many students into mainstream schools.

The academic program offered by the Emirates Academy for Hospitality Management is considered the first of its kind in the country, where three courses were adapted, providing students with theoretical and practical training from highly skilled professionals with extensive experience in the hospitality industry. This program enabled them to start their unique project at the Emirates Down Syndrome Hospitality Academy.

3. In what ways has the Emirates Down Syndrome Association benefited from previous participation in events like the AccessAbilities Expo, and what unique opportunities or collaborations have emerged as a result?

The AccessAbilities Expo created a global platform where people can share and exchange information, ideas, technologies, and best practices that enhance the lives of people of determination, making their daily lives much easier and envisioning a brighter future for them.

4. How many children does the Center accommodate? How do you evaluate the UAE’s support to People Of Determination, particularly children with Down Syndrome?

We currently serve 122 beneficiaries across the Emirates and of all nationalities

The UAE was one of the first countries to sign the international convention on the rights of persons with disabilities. Our wise leadership is deeply committed to this cause, and they’ve put in place laws, regulations, and national policies that protect the rights of people of determination across all domains. There are many impactful initiatives that are strategically designed to empower them to have equal opportunities, engage as active members within society, and be treated with equality.

5. Parents face unique challenges regarding their children reaching adulthood at 18 years old. Do you have any suggestions or recommendations to address these specific challenges?

The primary challenge faced by people with intellectual disabilities lies in the limited availability of employment opportunities. Hence, sustainable projects are the most effective solution, offering them the chance to become self-reliant, boost their self-confidence, enhance their skills, and increase their efficiency.

6. At times, the community, and families of individuals with disabilities are not sufficiently engaged and do not participate in activities that could be beneficial for their loved ones, what factors do you think contribute to this situation? Additionally, do you have any suggestions or insights on how to address this issue?

In our association, we place a strong emphasis on increasing community awareness, which is an integral part of our strategic orientation. Unfortunately, some hold misconceptions that people with Down syndrome lack the skills needed to make meaningful contributions to society. These stereotypes really hold them back, preventing them from showcasing their capabilities. Therefore, our efforts are directed towards increasing social awareness and dismantling these stereotypes.

7. Considering the broader goals of the Emirates Down Syndrome Association, how will the Emirates Down Syndrome Association use its involvement in AccessAbilities 2024 to raise awareness about Down Syndrome and push for more inclusivity and accessibility in the community?

The exhibition contributes to spreading awareness about the abilities and potential of people with disabilities, ending stereotypes about them, promoting their inclusion into various aspects of life, and showcasing live experiences of their productions and innovations.

Website:  Emirates Down Syndrome Association – Dubai