Learning more about the lives of people with disabilities is highly important as health workers can then offer care centered on the person’s priority needs and care (Havercamp et al., 2021). In this reflective piece, I explore the situation of people with disabilities, especially the stories of Liz and Deb. I want to illustrate stories that would reveal the obstacles experienced by the community members as they are trying to access community support services and also to show the complications of healthcare system navigations. Through critical analysis and reflection of my experiences and their own, I pursue to navigate deeper into the spheres of equity, access, health literacy, and advocacy as a nurse. Through this reflective process, I will be equipped with the skills to not only address the needs of people with disabilities but also to ensure that the places where such patients access healthcare are inclusive and empowering.
Context and Circumstances
By using Liz and Deb, who embody people with disabilities, the documentary immerses the audience in these individuals’ daily realizations. Liz, who has cerebral palsy as well as a resilient personality, finds herself confronted with numerous hurdles and obstacles related to the disorder. Cerebral palsy affects Liz’s motor skills to the point that tasks such as walking, grasping, and speaking become tiresome (Vitrikas et al., 2020). As expected, Liz uses technology and caregivers to run her day. However, in addition to the limits imposed by the physical reality, Liz also faces preconceptions in society that, most of the time, undervalue her potential, which leads to a lack of independence and complete engagement in various spheres of her life.
Down the line, Deb bravely enters the scene, living with Down syndrome, revealing the difficult path she has carefully trod (Bull, 2020) and featuring both tears and laughter. Down syndrome creates specific disorders for Deb, in most cases, in having education and employment opportunities. In her determination to learn and despite her enthusiasm, Deb faces many social barriers that prevent her social mobility. Discrimination and lack of inclusive support systems hamper Deb’s chances of gaining quality education and actual employment (Iezzoni et al., 2021), making clear the widespread difficulties inherent in the experience of individuals with disabilities in society. The complexities of Down syndrome, such as the falling cognitive abilities and also possible health problems, escalate the challenges faced by Deb, showcasing the multifaceted nature of disability and the requirement of comprehensive support systems that are customized as per the individual needs.
Through them, Liz and Deb eloquently cry out their needs, shading the color palette of their aspirations and the requirements vital to their prosperity. From simple personal care tasks to more intricate educational or vocational support requirements, Liz and Deb pinpoint the very different dimensions of their needs. Beyond the material support, they also crave acceptance, a sense of belonging, and recognition in their communities (Shepherd-Banigan et al., 2020). Their narratives reveal the importance of comprehensive support systems because they uncover the ability of these support systems to promote independence, enhance self-worth, and foster social inclusion for persons with disabilities. Also, the involvement of such individuals in our support efforts demonstrates the necessity of taking into account the unique needs and demands in the disability support frameworks, where person-centered approaches are emphasized, and end-user interests and capabilities are given priority (Björk-Åman et al., 2021), all the while addressing the inbuilt hurdles of the societal exclusion.
According to Horsell (2023), the Australian Government’s National Disability Insurance Scheme (NDIS) appears like a beacon of hope for persons such as Liz and Dab as it offers tailored support services, which can be personalized to fit their unique requirements. The NDIS funding will significantly enhance access to the continuum of services such as personal care assistance, therapeutic interventions, assistive technologies, and social participation programs. This integrated approach aims to ensure that disabled people live a significant life and contribute fully to their communities. The NDIS offers finance for essential supports, which encourage independence, choice, and control; these principles are of person-centered care and empowerment.
As reported by Cortese et al. (2021), this is a hyper-practical theory; however, NDIS, in actuality, has encountered some problems in its existing practice. The red-tape procedures of NDIS are the most significant barrier for the disabled and their families as a single entity. On top of long queues, unnecessarily complicated documenting procedures, and the lack of a unified information channel, disenchantment and frustration add to the psychological state of the individuals. On the one hand, the rules and funding allocation methods might not always be relevant for the people’s needs complexity, and they lead to a lack of services and, thus, service gaps. This systemic constraint calls for a fundamental redesign of the system, which will improve the effectiveness, accessibility, and transparency of the NDIS (Foster et al., 2021). It is also reported that various sections of the country implement NDIS differently, leading to different service delivery, less accessibility, and low quality. These distant and remote areas are having difficulties developing due to the small number of service providers and infrastructure. Unfortunately, the geographical disparities worsen the existing inequities, highlighting the critical aspects of targeting the programs so that one can deliver support to all the people regardless of the place where they live.
Nevertheless, the founding of NDIS serves as a significant advancement that aims to bring the place back to the rightful position of rights and needs of people with disabilities (St Guillaume et al., 2021). The personalized system and the attention to people’s autonomy respond to user independence and inclusion principles. To overcome the systematic obstacles and ensure better accessibility and transparency, NDIS (National et al. Scheme) has the chance to change individuals` lives, like Liz and Deb’s, by helping them reach their maximum potential and give to society. Despite this, advocacy and ongoing collaboration of the stakeholders made the NDIS fulfill the promise of enabling people with disabilities to live with dignity and have greater independence.
So what? – Reflect and analyze
Equity and access to healthcare and supportive services for people with disabilities are indispensable aspects of a society that values justice and diversity (Wolbring et al., 2021). However, upon closer examination, we find a plethora of intricate hurdles that hinder the delivery of caregiving for disabled individuals. These obstacles, whose importance you will understand by reading the relevant scholarly literature and lectures, are equally vital in underscoring the need to have systemic approaches that target dismantling the systemic obstacles and creating an environment conducive to equitable healthcare delivery.
First and foremost, structural limitations within the healthcare system are significant barriers to disabled people’s having equal accessibility (Doherty et al., 2020). These challenges comprise a broad spectrum of healthcare barriers, including a lack of physical accessibility to healthcare facilities, disabled accommodations, and the scarcity of assistive technologies. The infrastructural deficit does not only record physical access but also contributes to the feelings of exclusion of the already marginalized and depressed individuals. Communication barriers also demand a lot of attention in healthcare settings, especially for those who are unable to speak or have cognitive disabilities. In these settings, there are limited sign language interpreters and materials with inaccessible information, and healthcare providers lack communication skills, further complicating matters.
Also, among healthcare providers, there exist several attitudinal barriers that vastly contribute to the persons with disabilities’ care, which are person-centered (Hashemi et al., 2022). Negative stereotypes, unconscious biases, and assumptions about the disability potentials of the patients can affect the healthcare providers’ attitudes and behaviors negatively, compromising the services very much (Greenwald et al., 2022). Overcoming attitudinal barriers requires well-thought-out attempts that include teaching professionals to be empathic, respectful, and culturally sensitive through education, training, and ongoing self-evaluation. The experiences one gains from living with an individual with disabilities or caring for them provide so much insight into the complexities of disability and provision. What is even more important is that my own experiences of caring for a family member with a disability have profoundly changed my attitude and my worldview about disability. Their resilience, drive, and individual uniqueness have increased my understanding of disability as the multifaceted aspect of human diversity rather than a medical condition. These aggregate experiences have entrenched in me a strong sense of empathy, advocacy, and passion for inclusivity and dignity for people with disabilities in healthcare facilities and beyond.
What now? – Learning and implications for practice
As a nursing student passionately committed to the care of persons in a client-centered way, I fully acknowledge the unique role of various actions and interventions in providing holistic care for people with disabilities. Efficient communication strategies become the base of creating a context of empathy and common language between healthcare providers and people with disabilities (Havercamp et al., 2021). Through the use of different communication modalities, that are customized to the individual’s needs, such as plain language or visual aids and other options like sign language or communication boards and so on, health professionals can overcome the communication difficulties of those with speech or cognitive impairments. Also, participating in active listening, showing patience, and giving ample time for people to articulate themselves develop mutual understanding and empowerment, thus fostering teamwork in making decisions on their treatment.
To provide the same high-quality health care, it is essential to plan health care facilities to be available for people with disabilities. It consists of removing physical barriers and environmental adaption to enable individual self-determination and inclusiveness (Rathmann et al., 2020). An example of this provision is the provision of ramps and handrails for people with disabilities to move freely and inscrutably in healthcare institutions. In addition, the adaptation requirements are not only towards the physical changes but also making the assistive devices and technologies accessible. For example, hearing aids are among those tools that allow the hearing impaired to understand the same message. They help disabled people be included in their health, such as decision-making (Wolbring et al., 2021). Providing an environment that is welcoming and encouraging of equity, health practitioners can stick to the principles of dignity and autonomy. That leads to a sense that this is a home where people with disabilities are accepted and appreciated. This builds and consequently boosts their self-esteem and makes them feel loved and respected in all the healthcare stages that they go through. The care quality is upgraded, and disabled patients access medical care services with great satisfaction.
Maintaining the focus on the practice implications for Registered Nurses, the principles should be incorporated into the daily nursing practice to provide person-centered care to persons with disabilities. Pushing for policy changes within healthcare entities to ensure the inclusion and accommodation of patients with disabilities is undoubtedly relevant to achieving equal access to healthcare services (Pendo et al., 2020). Building trusting and interdependent relationships with individuals and their families will allow us to communicate openly and guarantee that their voices will be heard and respected in all care delivery processes. Besides, entering programs for education and training aimed at developing knowledge and skills in dealing with disabled people is proof of your firm will to establish an environment of inclusivity and equity within healthcare institutions. By applying the above actions and principles, Registered Nurses can enhance health outcomes and promote social inclusion for patients with disability by creating a healthcare environment that ensures dignity, autonomy, and respect for the individuals.
In conclusion, the value gained from the narratives of individuals with disabilities shows the barriers they encounter in accessing healthcare. The stories of Liz and Debably illustrate these disparities and the benefits offered by a program such as the National Disability Insurance Scheme. However, structural barriers do exist that require constant effort to achieve an equal healthcare system. Disability nursing, as future professionals, requires us to employ person-centered care, tackle different problems, and learn from our personal experiences as well. Through advocacy and inclusivity, our practice contributes to respect for each individual, autonomy, and dignity, aiming to improve health outcomes and social inclusion.
Reference
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