Independent Living for Individuals with Down Syndrome

Introduction

Down syndrome is referred to the condition in which an extra copy of the 21st chromosome in the child during birth is present that creates physical and mental developmental disabilities and delay in the child. The case study of Ola mentions that he is a 30-year old individual with Down Syndrome who due to increased frailty in his parents who used to provide entire care to him is required to be assessed by the social workers to determine the needs that are to be managed to help him live independently. In this context, the care need of Ola is to be assessed and his desirable, as well as achievable care goals, are to be identified. Moreover, the care to be implemented in meeting the care needs of Ola is to be discussed. Moreover, the role of the social worker along with the multi-disciplinary team to implement care for Ola is to be discussed.

Assessing care needs of Ola

The individuals with Down syndrome express delayed development due to which they show delay in learning physical and cognitive skills to lead life. It leads individuals with the disease show clumsiness in making movements and takes increased time for learning basic skills in life such as dressing, washing, maintaining hygiene and others (Özçalışkan et al., 2017). However, with time and effective assistance individuals with Down syndrome can learn the basic everyday living skills to be performed with minimum to no assistance that are adequate for maintaining their well-being (Christodoulou and Grohmann, 2018). In case of Ola who is suffering from Down syndrome, it is seen that he is continually supported by his parents in performing basic everyday activities such as dressing and washing, cooking food and others. Thus, his initial need assessed is Ola is to be supported to make him learn regarding the way to independently manage everyday activities such as dressing, cooking, washing, maintaining hygiene and others. As argued by Ugurlu and Altinkurt (2020), people with Down syndrome experiences eye problem. This is because of their hindered eye development caused by the extra presence of the gene. Thus, Ola needs his eyesight to be checked to ensure he is provided effective glasses to be used for correcting sight required for him to effectively watch things to manage actions independently.

The study by Antonarakis et al. (2020) mentions that people with Down syndrome have lower mean heart rate with the reduced age-specific blood pressure but higher affinity of developing cardiac valve pathology. Down syndrome individuals are prone to be at increased risk of experiencing heart failure (Versacci et al., 2018). The people with the diseases are prone to heart issues because Down syndrome individuals are born with heart defects due to change in the genetic framework (Colvin and Yeager, 2017). However, all individuals with Down syndrome does not have heart disease, but they are found to be prone to develop hindered cardiac health. In this condition, since Ola has Down syndrome, therefore his detailed cardiac health is to be examined with the supervision of experienced physicians to determine if there are any defects present in his heart for which effective actions are to be taken.

The case study informs that Ola does not know regarding the way to use public transport and has no jobs even though he has studied till 18 years. The presence of jobs among Down syndrome individuals helps them to be financially independent as well as have effective social interaction which could avoid them being lonely. This is because the individuals able to interact with people in the work environment which avoid them being depression out of loneliness (Bush and Tassé, 2017). Thus, Ola needs to be trained and supported to get a job based on his qualification and is required to be learned regarding the way to use public transportation. This is because public transportation allows travelling in a cheap way which is required by individuals to travel to places for jobs, social gatherings and others (Yang et al., 2018). As argued by Dupre and Weidman-Evans (2017), Down syndrome individuals have musculoskeletal defects due to which they have weaker muscle tone and losses ligaments leading them to have extensive joints flexibility. The poor muscle makes the Down syndrome individuals in making free movement and creates risk to manage effective muscle coordination. Thus, the movement efficiency of Ola is to be assessed as he may need assistive devices to ensure smooth walking with independence.

In the study by Schill et al. (2019), it is informed that individuals with Down syndrome experiences gut problems and the common issues include constipation, diarrhoea and indigestion. This is because individuals with Down syndrome have lower muscle tone in the oesophageal sphincter which causes the sphincter to work in hindered manner allowing reflux to be caused which are indication of indigestion. Moreover, people with Down syndrome due to low muscle tone spend less time sitting straight along with show decreased mobility which also contributes to their gastrointestinal issues as foods may not be effectively passed down to support enhanced digestion (Bermudez et al., 2019). The Down syndrome individuals show hindered ability to understand the diet and amount of water to be taken every day to remain healthy that also contributes to their gut problem (Orozco et al., 2019). In this aspect, Ola is needed to be provided a diet chart to be followed and learned regarding the importance of drinking water and maintaining diet. Since Ola does not know how to cook, he is to be provided basic knowledge regarding the way to cook healthy food on his own so that he can live independently. The individuals with Down syndrome with age are prone to develop anxiety, depression and other mental issues which are to be controlled to ensure their well-being (Haddad et al., 2018). Thus, Ola needs effective mental assistance with age to maintain healthy mental well-being.

The individuals with Down syndrome are seen to have hearing problem. This is because of the development of fluid in the middle ear and it can be temporary or permanent (Nightengale et al., 2017). Since Ola has Down syndrome, his needs his ear to be checked on regular interval to ensure he does not experience any hearing problem. The study by Amr (2018) mentions that 1 in 10 people who have Down syndrome experience issues with the functioning of their thyroid gland which is responsible for controlling their metabolism. The hindered functioning of the thyroid gland leads them to develop hypothyroidism which lowers their physical and mental reaction, create lack of energy, unnecessary weight gain and others. Thus, Ola needs to be assessed for hypothyroidism to ensure his health condition and required to be provided assistance to resolve the issue if it is identified in him.

The people with Down syndrome who has low immunity against diseases die to which they are prone to develop issues such as pneumonia (Santoro et al., 2021). Since Ola has Down syndrome, he needs effective support regarding the way to remain safe and enhance his immunity to retain well-being. As argued by Lautarescu et al. (2017), people with Down syndrome are prone to develop early dementia by the age of 40. This is because of the presence of beta-amyloid plaque in the brain out of hindered brain functioning caused by the extra presence of the 21st chromosome that codes for amyloid precursor protein in the brain. Thus, early dementia care is required to be arranged for Ola to help him live and cope with the condition on developing it at early or later stage.

Desirable and Achievable care goals of Ola

Desirable Care Goals

To arrange early dementia care and effective eyesight care for Ola

Achievable Care Goals

To arrange job training and work for Ola

To make Ola learn way to cook and maintain healthy diet

To educate Ola regarding the way to use public transport for travelling

To support Ola in learning to independently execute everyday actions like dressing, washing and maintaining hygiene and manage enhanced emotional health

Implementation of care for Ola

According to System theory, behaviour in individuals is influenced by various complex system and factors such as family constrict, friends, social culture, economic condition and others (Scott, 2019). Thus, as a social worker, in assessing Ola’s needs and implementing care, effective communication with his parents is made. It is to determine the health problems faced by Ola and the supports to be specifically provided to him to make him independent to live from his family who are currently unable to support him effectively. In order to assist Ola in getting job, he is initially to be reviewed by the social workers to understand professional and educational skills present in him. It is important to determine the type of employment in which Ola is to be involved in executing work. This is because three types of employment are competitive (working without support), supported working with support from job coach) and sheltered (working in sheltered workshop) employment is available for Down syndrome individuals in accessing jobs (Bush and Tassé, 2017). The patients with Down syndrome show ability to provide a decision regarding their care unless it is declared otherwise (Bush and Tassé, 2017).

In case of Ola, it is seen that he has continued education till 18 years indicating he has effective understand due to which he was able to continue his academics till such age. Therefore, Ola is to be informed regarding the type of employment present for him and job responsibilities to be managed to access decisions from him regarding the nature of employment he wished to be recruited to execute work. This is because Equality Act 2010 mentions that all individuals irrespective of their disability, race and others are to be equally treated and their rights along with dignity are to be maintained (gov.uk, 2010). Thus, allowing Ola to make his own decision ensures his right to decision making is been supported and his dignity is entertained by showing value towards his decision.

The Down syndrome individuals learn to cook by attending cooking classes where they are taught regarding the way to cook food on fire as well as in fireless environment (Farias et al., 2020). Thus, Ola is to be included in cooking classes to understand the basic way of cooking food to live independently. A dietician is to be included to support Ola who would inform by providing him with a chart regarding the simple diet to be maintained to avoid indigestion, constipation and other gut-related problem. This is because dieticians are professionals who have skill to determine the nature and amount of nutrients to be taken by individuals based on their health condition (Diamandopoulos and Green, 2018). Since gut-related issues are common in Down syndrome, effective diet is to be maintained by Ola to avoid hindered well-being.

The occupational therapist acts to assist people with Down syndrome and other disability regarding the way to achieve independence in everyday task through the step-by-step process. They inform individuals regarding the way to achieve gross and fine motor skills, feeding and dressing, executing leisure activities and others (Russo et al., 2020). In case of Ola, it is seen that he experiences issues with managing everyday duties with independence. Thus, an occupational therapist is to be involved in caring for Ola who would educate him regarding the way to achieve independence in executing everyday living activities.

According to Social Learning theory, the individual learns to behave by watching others in the society (Mazzucchelli, 2018). In regard to the theory, as a social worker, it was ensured that Ola is made to watch other Down syndrome individuals’ way of using public transport to gradually gain the ability in independently use the transport. Moreover, a social worker is to be allocated to educate Ola regarding the way to use public transportation by mentioning him way to check the bus schedule and ask passengers or drivers in confusion. Since people with learning disability such as Down syndrome experiences issues with wayfinding, the people with the condition are to be provided knowledge regarding the way to use navigation app in managing travelling alone in public (Meneghetti et al., 2018). Therefore, Ola is to be continuously trained for brief amount of time and required to be provided written information regarding the way to find way and transport through application for helping him learn way to available and use public transport for travelling. In order to accomplish the desired care goal for Ola, the social workers are to arrange monthly health assessment of Ola to determine if he is showing chances of developing dementia so that effective care support required by him can be arranged at the earliest.

Role in implementation of care for Ola

In order to implement care for Ola, as a social worker one of the roles is to respect and uphold the rights and dignity of the individual being cared for by the social worker. The role is to be accomplished by avoiding any self-discrimination of the individual and upholding their demands and needs to be fulfilled to ensure them emotional and physical well-being (BASW, 2021). Thus, while implementing care for Ola, as a social worker it was ensured that his needs and demands of care are appropriately identified and according support is provided by including his decision in care. The other role of the social worker and multi-disciplinary team is to share information ethically and legally with one another to ensure confidentiality and privacy of the patient (BASW, 2021). The role is effectively maintained in caring for Ola by ensuring sharing of his personal health information with the multi-disciplinary team involving occupational therapist, dieticians and others in a confidential manner and vice-versa. The role of the social workers is to engage with the community, family members are others to seek effective information regarding the individual to be cared (BASW, 2021; Patel et al., 2018). In case of Ola, effective communication with his parents is maintained to decide as well as implement care as a social worker to ensure all his needs are identified and met to ensure his independent living.

The role of the social workers is to share information regarding care with peers and other professionals to access support and professional supervision required for delivering improved care (BASW, 2021). In implementing care for Ola, effective communication with the multi-professionals and peers are made to determine the actions required to improve well-being of Ola and ensure his independent living at the earliest since his parents are becoming frail making them unable to support him. The role of the social worker is to maintain accurate and clear care records of the patients to support judgements made in the profession (BASW, 2021). In order to implement care for Ola, accurate and clarified records are made to support judgement in profession with care information for care been delivered by the multi-disciplinary team caring for Ola. The role of social workers and multi-disciplinary teams is to maintain professional boundaries, be trustworthy and remain transparent in care (BASW, 2021; van den Driessen Mareeuw et al., 2017). In implementing care for Ola, as a social worker and individuals from multi-disciplinary team, the professional boundaries are maintained by avoiding care beyond competence and trust is maintained with the individuals by showing honest and reliable care.

Reflection

In order to reflect regarding the care management of Ola, the Gibb’s reflective cycle is been used. This is because the cycle helps in systematically analyse the experiences of care during any specific situation or activity to identify the strength and weakness in the condition along with the improvements to be made (Tanaka et al., 2018). The six stages of Gibb’s reflective cycle are description, feelings, evaluation, analysis, conclusion and action plan (Li et al., 2020).

Description

As a social worker, I was responsible for assessing the care needs of Ola to support his independent living as his parents are becoming frail due to which they are expressing inability to care for him on whom Ola is dependent for support. The multi-disciplinary team including occupational therapist, job coach and others are included apart from me being a social worker in supporting development of independent living ability in Ola. The outcome was that desired and achievable goals are effectively met.

Feelings

During assessment of care needs for Ola, I felt confused regarding the way to initiate communication with Ola but with active assistance from my supervisor and Ola’s parents, I was able to build effective interaction with Ola to determine his needs. I felt before the initiation of assessment that Ola being Down syndrome patient would avoid interacting with me as such individual show avoidance to interact with strangers due to trust issues. However, after the situation, I felt confident in making further communication with Ola in assessing his needs and implementing care for him.

Evaluation

The positive experience regarding the situation of arranging care for Ola is that effective support from the family as well as Ola is faced to identify his key needs and discuss his care to be implemented. The other thing that went well is that physical and mental care support for Ola is been achieved with effective involvement of multi-disciplinary team. The thing which did not go well is that I lacked organisation skills due to which systematic delivery of care to Ola was not effectively achieved. The other thing which did not go well is that I failed to access informed consent from Ola in sharing his care detail with multi-disciplinary team even though it did not compromise his confidentiality and privacy.

Analysis

The effective assessment of Ola’s needs was accomplished because involving his parents during the initial interaction helped me in gaining trust from him to determine and examine his need both from him and his parent’s perspective. The effective physical and mental support for Ola went well because multi-disciplinary team holistically assisted me in implemented care for him. The informed consent from Ola in sharing his health information with the multi-disciplinary team was unable to be achieved because he was unable to understand the reason of involving some many different professionals for his care and showed lack of patience in informing the reason. The hindered organisation skill was showed by me due to inability to critically think to prioritise the care needs.

Conclusion

The reflection concludes that I have hindered organisation, patience and critical thinking skills along with hindrance in accessing informed consent from the patient during multi-disciplinary care. However, I expressed effective communication skill along with achieve trust from Ola to provide care to him.

Action Plan

In future, to improve my organisation skill I am going to develop a chart for the needs identified to determine which care is to be prioritised and nature of resources required to gathered them to systematically deliver the support. Moreover, I would try to think the adverse consequences to be faced with my lack of patience to understand its importance and gradually build it. The critical thinking skill is to be improved by identifying the issues followed by examining and scrutinising it to develop enhanced thinking to make conclusion of actions to be taken.

Conclusion

The above discussion concludes that Ola is an individual with Down syndrome who show inability to manage everyday living activities independently. His key needs are cooking assistance, support for dressing and washing, finding a job, using public transportation and others. It is argued that people with Down syndrome show early dementia and thus the desired care goal for Ola is to arrange dementia care in need at the earliest. The achievable care gaols for Ola are enhanced cooking ability, supporting use of public transport and others. For this purpose, the social workers along with multi-disciplinary team including dieticians, occupational therapist and job coach are included.

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