The World Report on Disability, 2011 identifies that approximately 15% of the world population is living with some form of disability (Matin et al., 2021). Disabilities comprise a diverse number of limitations in more than one area of functioning, however, are still overarchingly viewed as physically based (Havercamp et al., 2021; Phillips et al., 2021). This misconception is detrimental to care and treatment, especially for those with less visible impairments (Phillips et al., 2021). This has been especially true for my son, who, diagnosed with Cerebral Palsy, has seen regular attention paid to his physical limitations, but a complete ignorance of mental, emotional, and intellectual needs.
Disabilities in the health system:
Persons with disabilities (PWD) are overrepresented in the health care system and tend to experience worse health outcomes as well as greater prevalence of unmet health needs compared to non-disabled persons (Havercamp et al., 2021; Matin et al., 2021). Additionally, the lifespan of PWD is increasing due to continued medical advancement, thereby increasing risk of these individuals experiencing the effects of aging, as well as the development of more chronic and comorbid conditions, including dual diagnosis of one or more mental health conditions (Bourne et al., 2021).
Despite this, PWD experience persistent health inequities and greater barriers to quality care as compared to non-disabled persons. These may include (but are not limited to) inaccessible equipment and care environments, expected reliance on inconsistent or lacking social supports (i.e. aging caregivers), inadequate provider skill, mistreatment or care denial (Bourne et al., 2021; Havercamp et al., 2021; Matin et al., 2021).
Poor access and outcomes contribute to greater social isolation and exclusion of this population, as well as to delays in seeking care, lesser receipt of preventative screenings, and greater (re)hospitalisations for otherwise preventable or manageable conditions (Matin et al., 2021; Phillips et al., 2021). As a parent of a child with a disability, I would add to this list: increased stress and anxiety, an inability to access necessary and deserved supports in a timely manner (at times causing missed deadlines and inability to take advantage of supports at all), and delayed or failed progression and improvement in various areas of functioning.
Research on disability-related care has identified that quality and receipt of care is impacted by many (interconnected) factors. These include, among others, knowledge deficits, communication challenges, and feelings of stigmatization of PWD within the health system (Bourne et al., 2021; Phillips et al., 2021).
Knowledge deficits:
Knowledge deficits present a major barrier to care, and are evident among patients, caregivers, and practitioners. These deficits can lead to misunderstanding of health needs (by all), delays in seeking or receiving appropriate care (by PWD and their caregivers, or in the case of missed provider referrals), and incorrect assumptions, misconceptions, and biases (Bourne et al., 2021; Phillips et al, 2021). Especially as practitioners are concerned, health needs of PWD are not always well understood, resulting in ill-preparedness to provide care. Many providers in fact report feelings of inadequacy in providing disability-specific care and tend to avoid taking on patients with complex needs (Havercamp et al., 2021; Phillips et al., 2021). While specialists are available, transportation and cost to access these present additional barriers for PWD and their caregivers (Matin et al., 2021).
Communication challenges:
Communication challenges pose a further barrier to care. These may result from the disabilities themselves, inaccessible material formats (i.e. a lack of braille material for a blind individual; materials lacking lay terms), or from aforementioned knowledge deficits (resulting in incomplete or misdirected care discussions). As communication is concerned, a major criticism identified by PWD and disability advocates is that PWD feel spoken about rather than spoken to by providers (Bourne et al., 2021).This is especially true of individuals with intellectual disabilities. As result of communication challenges PWD (especially those with intellectual impairments) often demonstrate poorer health literacy, inability to remember, implement, or maintain treatment recommendations, and greater incidence of health risk behaviours – which contributes to greater stigmatization of this group and resultant receipt of poorer care (Matin et al., 2021).
Stigmatization and bias in the health system:
Acceptability of PWD remains a major obstacle to the receipt of appropriate and equitable care. Such feelings and behaviours are the result of many factors including prevailing and erroneous assumptions about PWD (knowledge deficits), being ignored in care discussions (communication challenges) as well as additional elements of institutional and structural discrimination which lead to fewer existent or accessible choices/options for care, abuse, isolation, and anxiety related to past negative health care experiences (Matin et al., 2021).
A major identified issue in the literature related to the acceptability of disability-specific care is that, at present, health care of PWD remains grounded in a biomedical approach. This approach highlights deficits, understands disability as something negative to be cured, and limits patient-centeredness (Phillips et al., 2021). If care is to be improved, health providers must move towards a social model of care that employs accessible and inclusive approaches and highlights the capability of the disabled person (and/or their caregivers, where necessary) to be involved in treatment and collaboratively manage conditions (Phillips et al., 2021). Use of a social approach allows a shift from viewing disability as a problem within the person, to a view of disability as challenges existing in the interaction between individuals and their surrounding physical and social environments (Phillips et al., 2021).
Changing perspectives and treatment:
To move towards the elimination of health disparities and achievement of health equity for PWD greater education surrounding disabilities and associated care is needed. Such education can improve provider knowledge skills and attitudes, restore feelings of autonomy and self-efficacy to disabled patients, and mitigate the impacts of poorly managed conditions on an already overburdened health system (Bourne et al., 2021; Havercamp et al., 2021; Phillips et al., 2021). Improving or implementing disability-specific education in health fields also sets a precedent for the inclusion of disability-related care/competence standards in registered health professions which ensures improvements in care competence are sustained (Havercamp et al., 2021).
To date, however, there exists little consensus on what or how to teach disability related content in health programs and organizations. Often, inclusion of this content is inconsistent across disciplines and usually result of advocacy by health champions rather than dictated by professional standards (Havercamp et al., 2021).
To change prevailing assumptions surrounding the care of PWD, education should be approached from a competency-based framework which highlights the importance of understanding the unique needs of PWD and sets standards to be met by all learners towards the provision of more competent care, and a recognition of patient capabilities (Havercamp et al., 2021). Areas to be addressed include provider professionalism, disability rights, conducting proper clinical assessment (that considers the impact of multiple health determinants and levels of influence) , and the provision of team-based care (that is centralized, when possible, and collaborative always) (Havercamp et al., 2021). Education should be consistent, ongoing (extending beyond school walls or individual workplace modules) and include concepts that are built-upon and updated over time as research expands and collective knowledge grows (Havercamp et al., 2021).
Formulating a disability-related curriculum should engage multiple actors, including PWD, disability advocates, health professionals, and researchers (Havercamp et al., 2021).
Towards accessible care for PWD:
In Ontario, the Accessibility for Ontarians with Disabilities Act (AODA) was established in 2005 (the first legislation of its kind) with an aim to develop, implement, and enforce standards for accessibility related to goods and services, facilities, employment, accommodation, and buildings (Accessibility for Ontarians with Disabilities Act [AODA], n.d.). The goal of the Act is to have Ontario become completely accessible for disabled residents by January 1, 2025 (AODA, n.d).
In the creation and implementation of AODA standards development committees are established and include representation from persons with disabilities, persons from organizations or sectors to whom standards will apply, and government officials with responsibilities to industries or groups of people affected (AODA, n.d.).
One such committee, the Health Care Standards Development Committee, was established in 2017 with an aim to improve equity in health care specifically, while acknowledging and respecting independence, dignity, and abilities of PWD (Government of Ontario, 2020).
The Committee recognized that often (in line with current research) the barriers faced by PWD in health care have little to do with the disability itself, but rather with incorrect assumptions made about health needs, intellect, and capacity for health decision-making. The Committee identified three major barriers to access to and receipt of health care for PWD: administration and accountability (including oversight of health service delivery and accommodations for PWD at different points of access); communication (including failure to provide accessible communication formats, and misunderstandings on the part of providers regarding consent and capacity); and education and training (including limited knowledge, stigma, stereotypes, and unconscious biases, limited data to support proper processes for care and accommodation, and a lack of organizational sensitivity to the needs of PWD) (Government of Ontario, 2020).
The Committee released initial recommendations in 2021 which included, among many items, the formation of universal policies, procedures, and practices for care of PWD, the requirement and provision of ongoing and up-to-date education, training, and toolkits, and the establishment of clear compliance mechanisms (Government of Ontario, 2020).
Work of the Committee is ongoing but has been severely impacted by the COVID-19 Pandemic (Government of Ontario, 2020).
Moving forward:
It remains to be seen if disability education and the implementation of accessibility standards, as prescribed under the AODA, will have sufficient impact on the preparation, attitudes, and biases of health providers and organizations as it relates to the provision of disability-specific care. As a parent of a child with a disability I am hopeful that the efforts within and outside of the health system will continue to gain momentum and only better define care needs and refine approaches over time. As a society we must recognize the inherent rights and strengths of PWD and their capacity to participate in care, as well as how prevailing attitudes and structures allows health inequities among this group to persist. We must make active efforts to improve ourselves and our system, and not continue to shift the responsibility of advocacy to those most marginalized.
References
Accessibility for Ontarians with Disabilities Act (n.d.). Guide to the act. from https://www.aoda.ca/guide-to-the-act/#introduction
Bourne, M. J., Smeltzer, S. C., & Kelly, M. M. (2021). Healthcare inequities among adults with developmental disability: An integrative review with implications for nursing education. Nurse Education in Practice, 57, 103225. https://doi.org/10.1016/j.nepr.2021.103225
Government of Ontario (2020, December). Development of health care standards - 2021 initial recommendations report. https://www.ontario.ca/page/development-health-care-standards-2021-initial-recommendations-report#section-0
Havercamp, S. M., Barnhart, W. R., Robinson, A. C., & Whalen Smith, C. N. (2021). What should we teach about disability? national consensus on disability competencies for health care education. Disability and Health Journal, 14(2), 100989. https://doi.org/10.1016/j.dhjo.2020.100989
Matin, B., Williamson, H. J., Karyani, A., Rezaei, S., Soofi, M., & Soltani, S. (2021). Barriers in access to healthcare for women with disabilities: A systematic review in qualitative studies. BMC Women's Health, 21(1). https://doi.org/10.1186/s12905-021-01189-5
Phillips, K. G., England, E., & Wishengrad, J. S. (2021). Disability-competence training influences health care providers’ conceptualizations of disability: An evaluation study. Disability and Health Journal, 14(4), 101124. https://doi.org/10.1016/j.dhjo.2021.101124
Bình luận