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Applying an Occupational Justice Lens to the Self-Managed Attendant Care Framework



Abstract

Service user activism explains the emergence of self-managed attendant services in Ontario. According to Katzman (2015), the activism is a part of the broad independent living movement aligned to the international disability movements that emerged during the 1960s across the United States and the United Kingdom. The movement was agitating for the betterment of services to persons living with disabilities by giving them the opportunity to voice their views about the programs. In the Canadian case, the independent living movement developed in the early 1980s following the establishment of the Living Resources Centers (ILRC) in Alberta, Manitoba and Ontario (Katzman, 2015). According to Graham (2015), the ILRC emerged to play an instrumental role in raising support for the redefinition of national assistance to the persons living with disability in Canada.

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The Ontario program The Ontario program that emerged in 1994 as a response to local community efforts operates based on the Self-managed Attendant Care Framework. Initially, the program began as a pilot study, which recruited 100 physically, challenged persons and gave them the opportunity for self-management (Katzman, 2015). Following a positive review of the pilot program by the Roeher Institute three years after the launch, a full program was initiated in 1998. As at 2004, the program had registered 691 participants while 300 applications were awaiting a review (Katzman, 2015). In 2006, the program had 720 participants and 300 on the waiting list. From 2014, measures were put in place to increase the number of beneficiaries. Against this backdrop, the paper examines direct funding through the occupational justice lens and considers the strengths and weaknesses of the funding model.

Direct Funding Program in Ontario

Direct funding has emerged as an innovative way of raising funds. Lanoix (2013) observed that in the case of the Self-managed Attendant Care Framework, the direct funding strategy is proving to be critical in helping adults living with physical disabilities to be employers of those persons who provide attendant care. As practice dictates, the attendants offer routine services such as cleaning, bathing, grooming and dressing. Being employers, participants take full responsibility of the management of their employees based on a budget that is based on individual needs.

Persons living with disabilities face a host of challenges. Persons living with disabilities only form a minority group. Although successful governments have made efforts to improve the quality lives of the persons living with disabilities, much still remains undone (Katzman, 2015). As a result, it is not surprising that the Ontario authorities came up with the Self-managed Attendant Care Framework as a part of the efforts to enhance the quality of life for persons living with disabilities. The program is under the administration of the Centre for Independent Living of Toronto (CILT). However, the CILT works in conjunction with the Ontario Network of Independent Living Centers (ONILC) (Katzman, 2015). The Ontario Ministry of Health and Long-Term Care finances the program through the Toronto Central Local Health Integration Network.

In the case of the Ontario program, self-managers (participants in the initiative) train attendants based on their unique needs and preferences. The Ministry of Community and Social Service (MCSS) Act of 1994 provides the guidelines on eligibility (Katzman, 2015). Based on the Act, attendant services are those essential services deemed critical for leading an ordinary life. Tasks such as housekeeping, toileting, dressing, grooming, washing and eating are some of those that the participants receive. For one to qualify, he/she must have attained the age of 16 or more, and is in need of attendant services as a result of permanent physical disability.

In practice, different individuals have dissimilar needs. Katzman (2015) noted that, as a funding initiative, direct funding is viewed as an option to serve the persons living with disabilities adult segment of the population. However, the beneficiaries are those who show willingness to assume extra management duties as well as potential risks associated with the program. The direct funding program across the Ontario province has a structure that allows beneficiaries to receive funds every month. Since the persons living with disabilities are assured of the benefits, they are in a position of engaging their preferred attendants. Besides selecting the attendants of choice, the beneficiaries also get to determine the nature of services that they need, the time of service delivery and how they are delivered.

Strengths and Limitations of Program

One of the strengths of direct funding program is increasing access to beneficiaries’ choices. As Katzman (2015) found, the investment in the scheme allows more persons living with disability from Ontario to lead independent lives from the comfort of their homes. Such independence is important since many other programs are modeled along structures, which treat beneficiaries as their appendages. As a result, they do not enjoy independence, as it is possible under the direct funding framework. Besides, those who gain from the program are free to identify persons that they prefer to work with. Consequently, the program enhances the choices that are available for the persons living with disabilities.

The program allows for greater flexibility and control of their lives. As observed previously, the Ontario program permits the recipients the opportunity to hire their preferred attendants besides deciding the nature of services they need. Based on this account, the beneficiaries can vary the services that they need from their attendants thus enjoying the flexibility of the program and taking control of their lives. Another major strength of the program is its portability (Slasberg & Beresford, 2015). Those enlisted in the framework have unrestricted freedom in terms of their travel choices. In brief, participants are free to travel to any destinations without suffering loss of service or need to reapply. Consequently, beneficiaries are eligible for the fund regardless o their location, as long as they were previously registered.

In practice, weaknesses undermine the effectiveness of programs. Katzman (2015) observed that in the current case, the beneficiaries’ choices might be limited in instances where the availability of aid or caregivers is limited. Besides the shortage problem, it is probable that screening the available caregivers could be problematic for participants of the program. Ideally, beneficiaries of the program need to screen potential caregivers before settling on the right one. Besides, the participant is obligated to be in control of the timesheets and paperwork. Although relatively easy, it might be taxing at the initial stages owing to the accuracy and the time needed to fill the papers. However, participants who find it difficult are free to seek help from relatives or friends.

Occupational Justice Lens: Program Evaluation

Withers (2012) observed that each person has a right to self-actualization and attainment of personal aspirations. Ordinarily, occupational justice underscores the moral claim for inclusivity. As an aspect of social justice, occupational justice lays emphasis on the treatment of people with respect and ensuring equitability in sharing of societal resources. Contemporarily, the area of interest is the acknowledgement of differences about peoples’ abilities. Based on the occupational justice lens, it would appear that the Ontario program is geared towards the enhancement of occupational justice. To begin with the recipients of funding know their needs probably better than traditional agency caregivers (Katzman, 2015).

Consequently, it is best if the decision on the selection of the caregiver is left with the actual user of the services rather than interfering with the process. As often, remarked, physical disability should not serve as a basis for denying the physically challenged persons the right to decide who works for them. Accordingly, the evaluation of the self-managed attendant program leads to the affirmation that it is a critical step towards the enhancement of occupational rights especially for recipients of services such as the persons living with disability.

Kelly (2016) noted that constructs of occupational justice such as occupational marginalization and occupational deprivation are referenced as a part of the efforts to assess the direct funding program. The two concepts are indicators of occupational injustices. Occupational marginalization results if the decision-making agencies block participants in program from being party to the decisions made (Goodley, Lawthom & Runswick-Cole, 2014). In other words, some members lack the opportunity to share on deliberations about occupations. The limit is however not on participation per se, rather it on the choices or their restrictions thereof, in connection to occupational participation. In a clearer way, authorities restrict on time, place or funding which ultimately confines an individual.

In this regard, it is noted that the self-managing attendant program is a liberator of beneficiaries from occupational marginalization. This is because despite the authorities taking control of budgeting, the program has given participants considerable autonomy and control. In particular, the beneficiaries have power to hire their aides; agree on the services to be delivered; where to get the services and their preferred locations. The aspect of portability has also contributed to the lessening of occupational marginalization.

Christensen (2012) contended that unlike occupational marginalization, occupational deprivation develops with time and emerges from external elements, which bar individuals from undertaking meaningful occupations. Occupational deprivation is wrought with negative effects such as low self-efficacy and being in an identity crisis. Persons living with disabilities form a set of individuals who are at a high risk of suffering occupational deprivation. Although the self-managing attendant program does not provide adequate capacity such that beneficiaries overcome the problem, it offers a glimmer of hope. By virtue of the empowerment they receive from the program, they stand a better chance of overcoming the issue. The position holds since giving participants some responsibilities is important in lifting their feelings about self-efficacy.

Taking an independent living perspective raises criticisms against community-based service delivery models. According to Katzman (2015), among the main concerns involve absence of choice, portability and flexibility. The emergence of the self-managed platforms is thus critical towards addressing the said limitations. Instead of transferring public resources to other agencies, self-managed frameworks remit funds directly to persons living with disabilities. This allows recipients direct control because they recruit attendants based on their individual preferences. Agency scheduling constraints are overcome since each individual designs his own schedule.

Based on the work of Katzman (2015), the program goes beyond service provision to allow some form of control to the persons living with disabilities. As a result, any assessment on the performance of the self-help project has to be reviewed positively. In broader words, the program allows the persons living with disabilities to exercise choice and freedom, a development that was unheard of under the conventional programs for the disadvantaged groups. The development led Katzman (2015) to hold that the self-managed attendant care had played a major role towards the redefinition of disability. Based on another study, Shakespeare (2014) indicated that the decisional autonomy was a major breakthrough in attempts among the persons living with disabilities to attain self-determination. Hence, like Katzman (2015), Shakespeare (2014) supports the view that self-managed attendant care has revolutionized service delivery for the persons living with disabilities in a positive manner.

Based on the review of literature, Katzman (2015) observed that direct funding, as is the case in self-managed attendant programs yields many positives. Largely, the enablement of the enjoyment of the independent living principle is central to the positive reviews of the funding model. The literature emphasizes emancipator discourse because of its emphasis on flexibility, control and choice (Kelly, 2016). According to the latter writer, the direct funding approach has raised the level of satisfaction that beneficiaries derive from the programs. Hence, the positive narrative surrounding the literature on the topic is grounded on happenings on the ground.

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Despite the positive reviews, not all is desirable when it comes to the implementation of the direct funding frameworks. In their research, Slasberg and Beresford (2015) observed that despite the many benefits the programs face a number of challenges, which should be addressed. For instance, the authors cited the lack of adequate infrastructure like support for service users and their families as a concern. In the review of literature, Katzman (2015) found that the implementation of the programs faced structural barriers during implementation. In particular, Katzman cited resistance from gatekeeper clinicians, ignorance on providing agencies as well as local governments as being obstacles to the success of the direct funding model. In addition, the lack of awareness on the model and lack of professional knowledge remained concerns for the programs.

Based on the discussion, the delivery of care is critical to the improvement of the welfare of people in terms of quality of life. Whereas ordinary individuals enjoy considerable control over the care they receive, persons living with disabilities have not had the same benefits until recently when the self-managed care framework began taking shape across various parts of the world (Mladenov, Owens & Cribb, 2015). In the case of Ontario, the emergence of direct funding has allowed the persons living with disabilities to lead improved quality lives owing to the empowerment that they receive based on the direct funding strategy. Based on the review of the literature, it emerges that the overall picture is that the self-managed attendant care framework yields positive outcomes for participants.

Conclusion

Direct funding initiatives place recipients of the assistance in the management role. Although the scheme allows the participants, some benefits such as greater freedom and control in terms of scheduling their services as well as deciding the nature of help that they receive some obstacles persist. For instance, infrastructural concerns continue being witnessed. In addition, lack of adequate public knowledge, ignorance from some key players such as clinicians among other issues hampers the effectiveness of the model. Nonetheless, the system seems to have worked relatively well within Ontario based on the positive reviews from the literature. Consequently, exploring areas of improvement would pave the way for the enhancement of service delivery to the persons living with disabilities.

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