Improve Our Support Systems

“I'm special like everyone else. I do not let people judge me for having Down syndrome. The important thing is how I feel about myself. On the inside, I feel beautiful.” – Edward Barbanell. Down syndrome continues to be the most common chromosomal disorder among humans. People with Down syndrome are born with an extra chromosome. Statistics from Caribbean countries estimate that one child with Down syndrome is born for every 800 to 1,000 live births. In 2012, the General Assembly of the United Nations declared March 21st as World Down Syndrome Day. This year’s theme is “Improve Our Support Systems," which emphasizes the need for inclusive support that grants individuals with Down syndrome choice, control, and dignity. Down syndrome occurs when an individual has an extra partial (or whole) copy of chromosome 21. Down syndrome exists in all regions across the globe. Down syndrome commonly results in variable effects on learning styles, physical characteristics and health. Adequate access to health care, to early intervention programmes, and to inclusive education, as well as appropriate research, is vital to the growth and development of the individual. Unfortunately, many individuals with Down syndrome are excluded from mainstream society. This exclusion arises from many factors such as fear, misinformation and intolerance within the society. What is Down syndrome?. Down syndrome is a genetic condition caused when an unusual cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome. The term "syndrome" refers to a set of symptoms that tend to happen together. With a syndrome, there is a pattern of differences or problems. The condition is named after an English physician, John Langdon Down, who first described it. Down syndrome varies in severity among individuals. The condition causes lifelong intellectual disability and developmental delays. It's the most common genetic chromosomal cause of intellectual disabilities in children. It also commonly causes other medical conditions, including heart and digestive system problems. Each person with Down syndrome is an individual. Problems with intellect and development are usually mild to moderate. Some people are healthy while others have serious health issues such as heart problems that are present at birth. Children and adults with Down syndrome have distinct face and body features. Though not all people with Down syndrome have the same features, some of the more common features include: flattened face and small nose with a flat bridge, small head and a short neck. Most children with Down syndrome have mild to moderate cognitive impairment. This means that they have problems with memory, learning new things, focusing and thinking, or making decisions that affect their everyday life. Language and speech are delayed. Early intervention and special education services can help children and teens with Down syndrome reach their full potential. Services for adults with Down syndrome can help support living a full life. Background. The estimated incidence of Down syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. Each year, approximately 3,000 to 5,000 children are born with this chromosome disorder. The quality of life of people with Down syndrome can be improved by meeting their health care needs, including regular check-ups with health professionals to monitor mental and physical condition and to provide timely intervention be it physiotherapy, occupational therapy, speech therapy, counselling or special education. Individuals with Down syndrome can achieve optimal quality of life through parental care and support, medical guidance, and community based support systems such as inclusive education at all levels. This facilitates their participation in mainstream society and the fulfillment of their personal potential. Improve Support Systems. Everyone needs support sometimes. However, people with Down syndrome need support to live and be included in the community, like everyone else. Families also need support, as they are often supporting their family member with Down syndrome. Many people with Down syndrome around the world do not receive the support they need. Many countries do not have support systems that meet the needs of people with disabilities and their families. Additionally, in many societies support systems do not respect the human rights of people with disabilities. The able-bodied community often views those with disabilities as somewhat invisible. Regrettably, this culture of invisibleness has been normalized within governance and as such the targeted policies and programmes necessary are not forthcoming. Sadly, this short-sightedness oftentimes leads to further stress for those living with Down syndrome. One area in which more support is required is that of social protection. Social protection for the Down syndrome community should cover the disability-related extra costs that people with disabilities and their families face. For example: Direct costs like paying for assistive technology or support, or higher health, transport or housing costs. Indirect costs like missed earnings that people with disabilities face, due to barriers faced at work, or that families face, because they have to provide support. Governments must make sure there is a support system, so people with disabilities are included in the community. People with Down syndrome have an added hurdle to overcome that of discrimination and biases. Locally, the Jamaica Down’s Syndrome Foundation (JDSF) is leading the way with the ‘Lots of Socks’ Campaign, a nationwide initiative designed to spark conversations, promote understanding, and encourage active participation in the cause. A study conducted by the JDSF shows that the incidence of Down syndrome in Jamaica is 1 in 868 live births. This is in keeping with the international experience. Presently, over 600 families of children with Down syndrome have registered with the Foundation. It has now been well documented that early intervention will result in children with Down Syndrome having better skills, higher levels of function and a better quality of life. Early intervention means that children with Down Syndrome will also live longer. The life expectancy for people living with DS has now increased to 60 years. On World Down Syndrome Day let us extend a hand of support to those who are living with and impacted by Down syndrome. Let us be the voices of those with Down syndrome and advocate on their behalf for improve support services to make their lives more meaningful. Importantly, on World Down Syndrome Day, landmarks across the globe will be lit in a dazzling display of blue and yellow lights, a symbol of solidarity for the Down’s syndrome community. Let us support this special day in the spaces and platforms we encounter. In the words of Robert M. Hensel, there is no greater disability in society, than the inability to see a person as more. Wayne Campbell is an educator and social commentator with an interest in development policies as they affect culture and or gender issues. waykam@yahoo.com @WayneCamo @jadownsyndrome © #ImproveOurSupportSystems #WorldDownSyndromeDay