Barriers And Challenges Of People With Down Syndrome In Ireland

INTRODUCTION

The study aims at taking a holistic view of the issues, problems, effect, and solutions of Down syndrome in Ireland. In plain English language, Down syndrome is a congenital disorder arising from a chromosome defect, causing intellectual impairment and physical abnormalities; including short stature and a broad facial profile in humans.

Down syndrome is a type of genetic disorder when a baby is being formed, during conception there is an error in cell division. In every individual, there are 46 chromosomes but when it is 47 chromosomes it is an error or there is a non-disjunction called Trisomy 21. With Down syndrome, there is a characteristic facial feature, physical growth delays, mild to moderate intellectual disability.

At birth, there would be certain characteristic features such as flat facial features, small head, and ears but during the first trimester of pregnancy with an ultrasound scab done it can be detected. This pre-natal screening is ingestion where a blood test is carried out and the scan can detect fluid at the back of the fetus’ neck which sometimes medicates Down syndrome.

People with Down syndrome may have a variety of birth defects. About half of all affected children are born with a heart defect. Digestive abnormalities, such as a blockage of the intestine, are less common.

It has also been established that individuals with Down syndrome are at a higher risk of developing several medical conditions which include celiac disease; an intolerance of wheat protein called Gluten and gastroesophageal reflux; a backflow of acidic stomach contents into the esophagus. It is estimated that about 15 percent of persons with Down syndrome have an underactive thyroid gland (hypothyroidism)

Women who are 35 years or older stand the risk of having a pregnancy affected by Down syndrome than the younger age. This is one key risk factor for Down syndrome. This maternal age factor from statistics show that a 25-year-old has 1 in 1200 chance of having a baby with Down syndrome, by 35 the risk can increase to 1 in 350, as of age 40, it is 1 in 100 and by 49, it is 1 in 10.

This is according to the national Down syndrome society which explains that the course of Down syndrome so not known but it correlates with a woman’s age. Down syndrome is not related to race, nationality, religion or socio-economic status but is more important to know about these individuals with Down syndrome is that they are more like others than they are different. Some of the physical characteristics are decreased muscle tone, flat face, eyes slanting up irregularly shaped ears, etc. Down syndrome patients can also be afflicted with other conditions, including heart disease, Alzheimer disease, and leukemia so also as a child they one usually smaller and their physical and mental developments are slower than younger people who don’t have Down syndrome.

This exists for people with Down syndrome because their physical and mental developments are slower. Some function in the mild to moderate range of delayed mental development while some children may function in the borderline to a low average range or some mentally retarded. In the area of developed mental progress in children, their motor development is slow so they get to start walking at 15 months to 36 months instead of 12 – 14 months. Language development is also delayed because of speech. Their hearing or ability to hear is also a barrier as 60-80% of children with Down syndrome have hearing deficits 40-45% of children with Down Syndrome have congenital heart disease and many will undergo cardiac surgery or under long term care by a pediatric cardiologist.

Intestinal abnormalities also occur at a higher frequency in children for a blockage of the food pipe (esophagus) small bowel and at the Anus are not uncommon with infants, which will need surgical correction for a normal functioning intestinal tract. Hypothyroidism between 15 and 20% of children with Down syndrome have this, which is more common due to thyroid disorder affecting normal central nervous system functioning. Other important medical aspects in Down syndrome also include seizure disorder, sleep apnea Alzheimer, leukemia, and skin disorder.

There is no medical treatment available presently even through many medications and various therapies have been attempted as the treatment for people with Down syndrome.

One of the biggest barriers facing children with Down syndrome in education is finally being dismantled.

The ‘soft’ barriers to enrolment that many parents of children with disabilities have faced have been removed with the announcement by the Minister for Education and Skills Richard Bruton that a new model for allocating Special Education Teaching Resources to mainstream primary and post-primary schools will be introduced from September 2017. (down syndrome Ireland 2019).

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Today early intervention programmers, preschool nurseries and integrated special education strategies have demonstrated that youngster with down syndrome can participate in many learning experiences which can positively influence their overall functioning.

Research has shown that early intervention environmental enrichment and assistance to families will result in progress that is usually not achieved by those infants who have not had such educational and stimulating experience. They can benefit from sensory stimulation, specific exercises like gross and fine motor skills /activities and instructing to cognitive development.

Preschool play important role in the early life so as to participate beyond the home and later in school, this can give the child a good foundation for life through the development of academic skill and physical as well as social abilities. This helps for later in life during adolescence the pre-vocational training has helped to learn good work habits and to engage in proper relationships.

What are the challenges people with DS have in society?

1. EDUCATION AND AWARENESS: -The importance of education for persons with Down syndrome cannot be overemphasized. It is vital for example; maternity professionals who have access to up to date and accurate information’s about Down syndrome support those expectant parents throughout their pregnancy. Other challenges are with the families who support them in relating, managing and assisting the newborn and nursing mother.
2. INTEGRATION AND ACCEPTANCE: - There is an issue relating to social integration and acceptance. Over the years and with improved education, awareness, and enlightenment program. Persons with Down syndrome are finding it much easier integrating into the society and the level of acceptance devoid of stigmatization has greatly improved.
3. HAVING A VOICE: How would the average person with Down syndrome be heard in the society, community and even my family? There are known limitations and both the public and private sector have helped create different programs to include seminar, conferences, meetings and so on, which are aimed at giving such person’s comparative advantage to be heard.
4. JOBS AND VOLUNTEERING: The issue relating to jobs and volunteering has also been challenging. How to transition persons with Down syndrome who have a high-performance ratio and functionality into the labor force, so they can live a healthy life like any other normal person. There have been different programs to assist them in these processes
5. HEALTH AND MEDICAL ISSUES: -Some health problems are more common among people with Down. Some of such health challenges are Intellectual disability, Cranial-Facial Anomalies, Speech and Language Impairment, Low Muscle Tone, Respiratory problems, Nervous and behavioral issues
6. STIGMATIZATION: The perception, reception, and acceptance of persons with Down syndrome within the society have been an issue of concern for all those involved in the care and service of the patient. Since some are not aware of the underline causes and features of Down syndrome, they may tend to stigmatize them when they meet such persons. The key is to create awareness, educate the masses and support those with such challenges while protecting them from stigmatization and encouraging them to interact with the broader society.
7. Behavioral Issues and Challenges: Behavioral can be categorized into two aspects 1. Cognitive 2. Learning. The issue arises when behavior becomes a challenge. This is the time when certain factors should be considered to assist the person with Down syndrome cope with the condition.

Lack of Confidence by Disabled People

One of the major barriers is the employment of disabled people is the lack of confidence they have. People with disabilities tend to suffer from a sense of low self-esteem and an overall lack of confidence in themselves. This is because of the additional challenges they must face in comparison to an individual who is not disabled as a result of their disability. Generally, most young people and teenagers as well as those with Down’s syndrome, struggle with self-esteem to a certain extent. They may also start to spot the differences between themselves and their counterparts. This can have an additional negative impact on their self-esteem. However, the development of healthy self-esteem can aid and encourage them to understanding and accepting who they are as people, rather than perceiving just the condition termed ‘Down’s syndrome’. This lack of confidence disabled people suffer from in turn has a knock-on impact on their willingness and zeal to be employed or remain in employment. A direct consequence of this limiting factor is the effect on performance and productivity by people with disabilities in the workplace.

People with disabilities can undergo necessary training and mentoring to improve their confidence in the workplace. The overall culture of celebrating people with disabilities in society would play a very major role in boosting the confidence of disabled people. For example, the Special Olympics for people with disabilities is a way of improving the confidence of people with special needs in the sports industry. Also, special recognition should be given to special achievements attained by people with special needs. Overall, the fair treatment of disabled people will help in picking up the confidence of disabled people. High self-esteem also allows us to accept who we are, with all our limitations and weaknesses and ask for help when necessary, simply because we can learn to focus on our strengths and what makes us unique as without self-esteem life will always feel a lot more cumbersome than it actually is.

Examples of good practice people with Down syndrome are expected to live a life as full as they want, this means they have the freedom to make choices of their own on what they need for themselves which is their person-centered planning. The society plays a major role in accepting people with Down syndrome where society develop an attitude that will prevent Down syndrome people to participate in community life. They should be offered a status that observes their right and privileges as citizens and in a real sense preserves their human dignity. More so people with Down syndrome will, in turn, prove society with a most valuable humanizing influence. There are various types of assistance available to people with Down syndrome in Ireland.

Newborn; there is the availability of professional experts and counselors for nursing mothers and their babies.

• Support Groups: This is various groups either within the community, hospitals, homes, volunteers ‘groups, who dedicate time, resource and energy to include finances in support of persons with down syndrome and their programs.
• Training: This is another good practice in training staffs, caregivers and families who will be caring for the person with Down syndrome. Most of the patients require special needs and with such comes high-level care and responsibilities. It is imperative to provide special training for those caregivers either paid or voluntary.
• Fund Raising: It is a known fact that because of the challenges of Down syndrome and the needs of most patients; there is a high cost and expense involved in caring for their needs. Fundraising and other means of generating funds in support of the programs and processes for care are good practices made available for persons with Down syndrome. The process of raising funds in continuous and there is no limit to the number of societies, communities, cooperate sponsorship and support, government support, religious places and a host of other organization have been known to come out in support of persons with Down syndrome

Awareness programs, social welfare, and care: To help build awareness, educate the masses and get the people informed, both public or private sector in involving in various support programs and processes geared towards creating social awareness to benefit persons with Down syndrome. Such programs range from sporting events, seminars and conferences, outreach programs, entertainment, cultural affairs, community events and celebrations and so on.

Education: Education is very important and essential for both adults and minors with Down syndrome. There are special programs considered in line with the Individual Education Plan (IEP) used for educating those children faced with the challenge of Down syndrome. Children with Down syndrome, who have a moderate assessment, receive an average of 3.5 teaching hours as oppose children with mild assessment who receive 2.5 hours.

There has been a change in attitude, mainly because people with Down syndrome no longer see themselves as recipients of charity, but as people who have rights as citizens to fulfill their potential. Government policies, both nationally and internationally, have exposed a vision where people with disabilities are valued, respected and included. This vision has provided a movement for change in the practices of people working in the disability area focusing on participation and interactions for people with a disability with others who do not have a disability in everyday living. Inclusion means involvement in activities, developing and maintaining relationships, and having a sense of belonging. It is important that people are not segregated due to their disability in living or working arrangements. (www.nap.ie national Action plan).

CONCLUSION

Down syndrome is no doubt a challenging condition, which has gained better and improved attention, knowledge and care over the years in Ireland. Due to the nature of the condition and requirements in caring for persons with Down syndrome, the demands for care-professionals is on the increase, awareness is growing and there has been improved programs and processes through research and planning in providing better treatment and management for persons with the condition.

I, therefore, conclude that having down syndrome is very difficult to have. The birth of a child with Down syndrome may demand a new lifestyle for the family. Parents of children with disabilities are subject not only to the pressures and tensions faced by parents of nondisabled children but also to the unique challenges and experiences associated with parenting a child with a disability. In about 95 percent of cases of children with Down syndrome have an extra chromosome 21. Just over 20 percent of infants with Down syndrome are born to mothers less than 35 years old, get these older mothers to have only 6 to 7 percent of children. However, the number of women having babies after 35 has been rising quite rapidly in the last few years.