Keywords

Americans With Disabilities Act, disabled, nurses, nursing education, nursing faculty

 

Authors

  1. Neal-Boylan, Leslie PhD, RN, CRRN, APRN, FAAN
  2. Miller, Michelle JD, RN, MPH

Abstract

The Americans With Disabilities Act requires that nursing programs not discriminate against students with disabilities. This article describes a qualitative study of RNs who had disabilities while in nursing school. As students, participants tried to hide their disabilities, experienced fear and anger from faculty, were frequently told they could never be nurses, wanted to be treated like everyone else, had to work harder than others to prove themselves worthy, and learned to advocate for themselves.

 

Article Content

Studies of registered nurses (RN) with physical and/or sensory disabilities have concluded that these nurses often face discrimination in the workplace.1-5 Nurses often hide their disabilities because of concerns that they will not be hired or will be treated differently. Some nurses with disabilities acquired their disabilities after graduating from a nursing program, but others had their disability while in school. The latter were successful in their educational program, graduated, and are practicing RNs.

 

The literature indicates that nursing schools, in general, are not welcoming to students with disabilities, especially physical disabilities.6 In 1998, the American Nurses Association7 declared its position against discriminating on the basis of disability in education and clinical practice. In 2016, the National League for Nursing8 called for increased awareness and education about the issues of students with disabilities. The American Association of Colleges of Nursing is in the process of finalizing a position statement on diversity, including individuals with disabilities. An understanding of the facilitators and barriers encountered by practicing nurses who had learning or physical disabilities while in nursing school can help clarify what worked and did not work for them and whether nurse educator concerns about students with disabilities are justified. The purpose of this qualitative study was to explore the experiences of RNs who had disabilities while in their nursing program. The following research questions guided the study: (1) What is it like to be a nursing student with a disability? (2) What barriers and what facilitators are encountered by nursing students with disabilities? (3) What modifications could be made to improve the experience of nursing students with disabilities? (4) How have the experiences in a nursing program influenced the work life of the nurse with a disability?

 

Background

In 2012, the Centers for Disease Control estimated that 74 million people had a disability. The 2012 Disability Status Report revealed that 10.4% of people aged 21 to 64 years had a disability.9 The number of nursing students with disabilities is unknown, but college students with disabilities are increasing. Across the United States, 2.6% of college freshmen reported having a disability in 1978.10 That number had more than tripled by 1991 to 8.8%. According to the US Department of Education in 2011 to 2012, 11% of undergraduates in postsecondary schools reported having a disability.11

 

One of the major contributing factors to the large increase in students with disabilities enrolling in college was the passage of the Americans with Disabilities Act of 1990 (ADA).12 Although the Rehabilitation Act of 1973 (section 504) had prohibited all universities receiving federal funds from discriminating against students on the basis of disability almost 20 years before the passage of the ADA, the latter statute was more comprehensive in its coverage.10 Unhappy with the narrow way in which the US Supreme Court had chosen to interpret what was covered as a disability under the law, Congress amended the ADA with the ADA Amendments Act of 2008 (ADAAA)13 to clarify that "disability" should be defined broadly to effectuate the purpose of the ADA in enabling disabled persons to participate fully in their community.14

 

It appears that students with learning disabilities are generally admitted into schools of nursing, while students with physical disabilities are rarely admitted.6 It is unclear why this is the case. However, Aaberg15 measured implicit attitudes of nurse educators from across the United States toward people with visible disabilities. She found that there is a strong bias in favor of people who are not disabled and more so among nurse educators than in the general population. She attributed this partially to the fact that many nurse educators were educated with an emphasis on hands-on care. Ashcroft and Lutfiyya16 conducted a grounded theory study of nurse educators in Canada and found that participants believed that students with disabilities could be competent nurses and should be among the student population; however, they found failure to disclose the disability frustrating along with other challenges associated with teaching these students.

 

Also relevant to this discussion is the lack of understanding on the part of nursing faculty regarding the ADA. May17 found that out of 231 nurse educators questioned about their knowledge of the ADA, only 21% received a passing score. Similar to the concerns about nurses with disabilities,1-3,5 nurse educators worry that students cannot provide safe care.15,16 Myths and misconceptions regarding the expectations for nursing programs add barriers to creating and maintaining inclusive environments.18 Nursing students may also have negative perceptions of colleagues and others with disabilities,19 and this may add to a negative environment for prospective students with disabilities.

 

Another aspect of this discussion pertains to technical standards and essential functions. The former pertain to nonacademic requirements for admission and the likelihood of success in the program, whereas essential functions pertain to the nursing functions required by a specific job. Nurse educators and administrators often confuse the two and try to base technical standards on essential functions.20,21 Essential functions should not form the basis of what a nursing student should know because they pertain to the work requirements of the specific job. Nurses work in a variety of settings that require them to perform a variety of essential functions. For example, a home health nurse might need to climb stairs to reach a patient's home. This might be considered an essential function of that particular job; however, not all nurses need to be able to climb stairs. Technical standards, such as the ability to auscultate the lungs, are those that should be required of all students; however, the hearing-impaired student might require a special stethoscope to accomplish this. The school is required to provide a reasonable accommodation so the student can meet the technical standard. According to Matt et al,21 technical standards should apply to all students whether or not they are disabled, be based only on current practice standards, and state the skill to be accomplished, not how one should accomplish the skill. The technical standards should reflect the required skills and abilities, not how the skills should be performed.22

 

Method

Approval to conduct the study was obtained from the university's institutional review board (IRB). The study was conducted using constant comparative analysis. After informed consent was obtained, data were collected via a demographic form and an audiotaped interview using an unstructured interview guide. An IRB-approved announcement was placed online, in printed nursing publications, and on appropriate Web sites, including the National Organization of Nurses With Disabilities. The snowball method was also used to obtain participants. The digitally recorded interviews were transcribed verbatim and coded for anonymity. A nurse educator/researcher and a nurse attorney analyzed and coded the transcripts independently. A coding structure was developed based on consensus about emerging themes. Themes were revised and refined as interviews continued. Purposive sampling was used to explore and validate emerging themes and to ensure sample variation. Data were collected until data saturation was reached. A summary of the emerging story was sent to participants for participant verification. Only 2 participants added comments to the summary, and these were confirmed by further analysis of participant transcripts.

 

Sample

Theoretical and purposive sampling was used in this study. Inclusion criteria included current licensure as an RN in the United States, ability to read and speak English, and a minimum of a diploma, associate degree, or baccalaureate degree in nursing since 1990 (the year of the original ADA legislation). Nurses were eligible if they had a documented learning disability or a self-identified physical or sensory disability (vision, hearing, or communication impairment). Subjects with diagnosed mental illness were excluded. However, nurses who self-identified with depression or anxiety were not excluded because, in the researchers' experience, these symptoms frequently occur along with or because of the disability.

 

Fifteen nurses from 8 states participated. The Table, Supplemental Digital Content 1, http://links.lww.com/NE/A320, lists the disabilities of the participants. Two participants graduated in the 1990s; 12 had been in a nursing program since 2008 (year of the ADAAA). The participants ranged in age from 26 to 62 years, with a mean of 45 years. All were female and white, with the exception of 1 African American. Four participants are working in schools of nursing, 5 in hospital settings, 3 in home or community health, 1 in a rehabilitation facility, and 1 in mental health, and 1 was unemployed.

 

Results

This study did not specifically ask participants about their experiences applying to or being admitted to nursing programs, although several mentioned that they had to apply to several schools to get accepted. Others mentioned that they attended nursing programs with strong associations to rehabilitation. One participant referred to faculty as "gatekeepers of nursing and they pick and choose who they feel deserve to be a nurse and weed you out versus trying to help you." Another commented that students with disabilities could inspire educational innovation in nursing education and thereby enhance the profession: "I think there are a lot of people out there who have different ways of seeing the world and different ways of learning that could actually be a benefit to our profession, if they're given the right tools."

 

Nurses in the study agreed that nursing students with disabilities want to be treated like everyone else. However, working with each individual to determine what they really need, if anything, instead of assuming what the student might want or need was an important distinction. One participant commented: "Equal treatment doesn't mean being treated the same as everyone else." Another said: "You have to look at it case by case and not just automatically throw the person away."

 

As students, participants were sometimes asked if they needed accommodations. Typically, they either did not request an accommodation or sought one themselves from the disability office on campus. Interestingly, a prevailing theme of the study was to "persevere," "be stubborn, just do it," and "keep at it-don't give up." Many students did not want accommodations because they did not want to be seen as different and took it as a personal challenge to meet the requirements without accommodations. Others were told a variation of "We can't make accommodations for you. You have to be able to do whatever nurses have to be able to do."

 

Those who received accommodations often found them to be inadequate, especially because another student was often asked to volunteer to take notes and did not take "good" notes or was absent or unavailable. Participants learned to "be flexible," to "advocate for [oneself]," and to become "empowered." There was a strong theme that "the only one in the way [of making it through the nursing program] is you." All agreed that nursing students with disabilities often have to prove themselves to others and work harder than their peers to be accepted. Participants said it was important to "be prepared, do your research, and know your rights."

 

Surprisingly, requested accommodations that were often reasonable and approved by the university disabilities office were not granted by the nursing program, such as in the case of a participant who had urinary problems related to a chronic disease and was not released to go to the restroom during 3-hour examinations. Accommodations that were provided typically included extended test-taking periods, a student note taker, closed captioning, and an interpreter and/or special stethoscopes for students with hearing impairments. In 1 case, a nurse was employed by the hospital and assigned to accompany the student throughout the clinical practicum. All of the participants noted that advances in technology had made accommodations much easier.

 

Similar to the studies conducted on RNs regarding their work life experiences, participants perceived that faculty and administrators were frequently concerned about whether the student could provide safe care. Participants indicated there was fear, misinterpretation, lack of understanding, anger, and anticipation of inconvenience or retribution on the part of faculty or administration. There was a perception that nursing faculty associated disability with a lack of intelligence and did not understand there was "more than one way to do things." Many participants felt they should hide the disability and were more likely to disclose to a trusted fellow student than to faculty. One participant said: "You just have to help other people understand." Another added: "I can get from point A to point B, but it'll be by a different path."

 

Another common theme of the study was the impression that the participant could never be a nurse or be able to handle the course. Interestingly, in undergraduate programs, most participants had difficulty getting assistance or support in class and in clinical practice, while graduate students tended to have more difficulty getting assistance in clinical practice, especially if they chose a nurse practitioner program.

 

Peer support and the university or college disability office were most helpful to participants while in nursing school. Many were concerned about placing their peers in a difficult position with faculty so were careful if and when they confided about the disability or their need for assistance. However, there was a strong perception that fellow students were usually committed to helping the person with the disability to make it through and everyone was "in this together."

 

Participants agreed that having a disability in their nursing program had made them more empathetic as nurses. They perceived themselves as strong advocates for patients and better instructors and preceptors. They were more conscious of patient safety and of providing quality of care. As 1 participant summarized: it "has made [me] more aware of [my] surroundings, more visual, focused on communications, [and] empathetic. [I understand] patient vulnerability."

 

It is interesting to note that, since graduation, many of the participants were working in rehabilitation-related settings. Several others were nurse educators; however, a few others were working in medical-surgical settings. In several of the work settings, the supervisor was not a nurse. A previous study3 found that nurses with disabilities who were employed were working for supervisors who were either not nurses or were nurses with a disability or chronic illness themselves.

 

Participant Recommendations to Faculty, Administrators and Prospective Students

Participants urged faculty and administrators to not "slam the door in faces," to "keep an open mind," and "work with the individual and find out what [the] student really needs." Faculty and administrators need to educate themselves about their legal responsibilities and educate students about the ADA and their rights. Simulation is an area that can be used to prepare all students for clinical practice23; however, according to 1 participant, it is important to remember that hearing-impaired students cannot hear what the manikin is saying. Participants recommended that students seek out the disability office on campus to help advocate for their rights but also for themselves and "not hide behind the disability. [Instead they should] persevere." One participant summarized: "I also make it a point to say that I am not disabled, I am enabled."

 

Discussion

The prevailing theme to persevere, often without accommodations, resonates with the culture of nursing. The idea of being "heroic" is a common theme from previous studies of nurses with disabilities.1-5 Nurses expect one another to carry on with their responsibilities and not seek ways to avoid work. Another theme that is echoed in previous studies is the idea of hiding one's disability, if possible.1-5 Interestingly, looking back on their own experiences while in school, participants advised against hiding the disability and instead to advocate for one's rights.

 

The results of the study reveal clearly that nurses with disabilities can be successful in nursing programs. Like every other applicant, they should be assessed on an individual basis and, per the ADA, admitted or disqualified based on the qualifications by which all other applicants are evaluated. The question of whether reasonable accommodations can be provided is determined after the student is accepted. It is necessary to remember what nurse educators tell students about patient care: There is more than 1 way to provide care safely.

 

As Trotter et al24 found in a recent study of health care providers with hearing loss, the strategies that providers use to communicate effectively are no different from those used by hearing impaired providers. Similar to the Trotter et al study, the current study found that there can be advantages to hearing loss. In this case, nurses were able to interpret what physicians for whom English was a second language were saying because they could lip read. The participants in this study, with 2 exceptions (1 of whom was in graduate school full-time), were working as nurses. They have demonstrated that they contribute to the profession. How many potentially effective nurses do we turn away because of our inherent biases?

 

Limitations

This was a qualitative study and was limited to participants who volunteered to be in the study and who had self-identified physical and/or sensory disabilities or documented learning disabilities. The results are therefore not generalizable. There were also fewer participants with physical disabilities other than hearing impairments in the sample than those with learning disabilities; however, this is likely because fewer applicants with physical disabilities such as those that hamper mobility are admitted to nursing programs. The variability of the sample and the consensus of participant verification enhanced the trustworthiness of the data. Participant verification and the use of 2 investigators, 1 a nurse attorney, contributed to the confirmability of the results. Transferability is evident by the similarity of the results to the findings in other research studies, and the results are credible based on the narratives provided by the participants.

 

Implications

Title II of the ADA, which applies to state-run postsecondary education, states that "[n]o qualified individual with a disability, shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity."25 Similarly, private colleges and universities are prohibited from discriminating against disabled students under Title III of the ADA.26 Furthermore, the ADA requires that disabled students be granted reasonable accommodations to ensure they are able to participate fully in their chosen academic program.27

 

Schools of nursing should not develop specific policies and procedures regarding accommodation of students with disabilities other than to comply with the ADA. In their attempt to create policies and procedures, such as technical standards biased against students with disabilities, schools have unwittingly contributed to discrimination. If a student fails to request accommodations, a university will not be held liable under the ADA for failure to provide a reasonable accommodation.28 Moreover, a student is not entitled to receive any and all accommodations requested. The university is only required to provide "reasonable" accommodations.29 Any accommodations that would place an undue burden on the school or fundamentally alter the nature of the program are not required by the ADA.30 In fact, courts demonstrate a great deal of deference to the academic judgment of faculty as to the types of accommodations that would so greatly modify the specific course of study that the student would not be learning what they need to learn.31 This is especially true in the health care fields, as courts are reluctant to substitute their judgment for that of the faculty as to whether a student can succeed in their chosen profession.32 As long as the school has made a careful, good faith effort to consider the effect on the program of the accommodation requested, courts will not second-guess their academic judgment.33 Once accommodations have been granted, the faculty is responsible for working with the student to implement them. Disabled students must be qualified to complete the course of study with reasonable accommodations in place.34 If the student cannot pass the program's requirements with accommodations in place, then the school may dismiss that student without fearing repercussions under the law.35

 

The ADA requires that disabled students are not denied admission or dismissed from a course of study based on their disability. Furthermore, a disabled student must be reasonably accommodated to ensure equal opportunity in their academic progress. The requirement for reasonable accommodations extends to the clinical setting. As students participating in a clinical rotation do not fall under the definition of employee of a hospital or other clinical site under the ADA,35 the clinical site is not statutorily required to provide reasonable accommodations for a disabled student. However, the federal agencies that enforce section 504 and the ADA require that a school of nursing covered by these laws place disabled students only in clinical sites that agree to provide reasonable accommodations needed by the students.36,37

 

The law was designed to prevent disabled people from being excluded from society based on stereotypes,38 such as the assumption on the part of faculty members that a disabled student is unable to complete the work required of a nursing student, as reported by many of the nurses participating in this study. However, it is difficult for courts to judge whether faculty have truly engaged in an interactive process with a student to fully explore the optimal conditions for that student's success. Faculty development to increase awareness and knowledge of the law can enhance compliance. Beyond understanding the basic requirements of the ADA, nursing faculty must decide whether to take the further step of implementing the spirit of the law to create an environment in which students who might become excellent nurses, but who happen to be disabled, receive a genuinely equal opportunity to become nurses.39

 

In summary, this study sought to understand the experiences of RNs with disabilities while they attended nursing school. Results revealed that there remains inconsistency in how students with disabilities are treated and how the ADA is interpreted. Nurse educators and administrators could benefit from increased knowledge and awareness of the law and its requirements.

 

References

 

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