Barriers to Health Care Among Adults with Disabilities in Connecticut

Bruder, M. B., Lutz, T. M., & Ferreira, K. E. (2024). Barriers to health care among adults with disabilities in Connecticut. Developmental Disabilities Network Journal, 4(2), 59-79. https://doi.org/10.59620/2694-1104.1089

Barriers to Health Care Among Adults with Disabilities in Connecticut PDF File

Introduction

According to Behavioral Risk Factor Surveillance System (BRFSS) self-report data, an estimated 25% of adults in the U.S. are living with one or more disability, an increase from previous estimates (Iezzoni et al., 2014; Okoro et al., 2018; Reichard et al., 2011). For the BRFSS, disability is operationalized as a “yes” response to experiencing any of the six types or functional categories of disability as required by Section 4302 of the Patient Protection and Affordable Care Act (ACA) data collection standards on disability status and other demographic characteristics (Assistant Secretary for Planning and Evaluation, 2011; Okoro et al., 2018; see Table 1). These categories emanated from the World Health Organization’s (WHO) functional or biopsychosocial model of disability (WHO, 2001). Persons with disabilities will be referred PWD for the remainder of the paper.

One commonality among PWD is a a high probablility of need for ongoing and comprehensive support and care from health care providers (Lagu et al., 2022). This is not just because they have a disability, but also because of a need to prevent and treat co-occurring chronic conditions that PWD experience at significantly higher rates than those without disabilities. These include conditions such cardiac disease, diabetes, and obesity. Additionally, PWD are more likely to smoke, more likely to have unmet health care needs, less likely to receive preventative health care and health screenings, and less likely to have access to mental health services (Cree et al., 2020; Dixon-Ibarra & Horner-Johnson, 2014; Drum et al., 2005; Horner-Johnson et al., 2015; Iezzoni, Kurtz, & Rao, 2015; Krahn et al., 2015; Mahmoudi & Meade, 2015; Mitra et al., 2011; National Council on Disability [NCD], 2009; Reichard et al., 2011). These findings identify disparities for PWD in accessing and receiving quality physical and mental health care and disparities in health outcomes. When health care is not accessible nor available to PWD, their health is negatively impacted. COVID-19 exacerbated many of these health issues in PWD, leaving many with unmet health care needs (e.g., Assi et al., 2022; Cochran, 2020; Lund et al., 2020; Nagarajan et al., 2022; Schwartz et al., 2021; Turk & Mitra, 2022b; D. Tyler et al., 2021). According to 2020 National Health Interview Survey data, a higher proportion of adults with disabilities reported delaying or not getting medical care for something other than COVID-19, compared to adults without disabilities (Akobirshoev et al., 2022).

To call attention to the medical needs of this diverse community, the NCD (2022) published a framework to achieve health equity for PWD with five core areas.

1. Designating PWD as a Special Medically Underserved Population (SMUP) under the Public Health Services Act.
2. Designating PWD as a Health Disparity Population under the Minority Health and Health Disparities Research and Education Act.
3. Requiring comprehensive clinical care curricula in healthcare professional schools; 4. Requiring the use of accessible medical and diagnostic equipment.
4. Improving data collection concerning healthcare for PWD across the lifespan. (pp. 2-3).

Unfortunately, this framework has not been implemented, contributing to the many barriers PWD experience in accessing the health care they need.

Barriers to Health Care for Persons with Disabilities

There are many structural barriers to health care access for PWD. These include a lack of accessible transportation (Chiu et al., 2017) and a lack of physical access to health care facilities and offices, such as lack of access to parking lots, exterior entrances, and restrooms (Frost et al., 2015; Grabois et al., 1999; Morris et al., 2017; Mudrick et al., 2012, 2019; Pharr et al., 2019). PWD also experience a lack of available and accessible medical diagnostic equipment (MDE) at health care facilities. This includes exam tables, weight scales, and diagnostic imaging technologies (Grabois et al., 1999; Iezzoni & Pendo, 2018; Iezzoni, Wint, et al., 2015; Lagu et al., 2013; Mudrick et al., 2012; Pharr et al., 2019).

These barriers are also evident in a study that revealed health care providers’ concerns about the cost of providing physical accommodations for PWD (Lagu et al., 2022). Additional concerns identified by health care providers include the safety of accessible MDE, ease of use of accessible equipment, and issues related to space and size of equipment (Agaronnik et al., 2019; Maragh-Bass et al., 2018). Studies of medical office administrators and managers also indicated a lack of knowledge regarding accessible equipment and accommodations for PWD (Pharr, 2013, 2014; Pharr et al., 2019) and beliefs that use of accessible equipment can increase staff injury (Fragala et al., 2017; Morris et al., 2017).

While physical access to care and equipment remains a large contribution to health care inequities for PWD, an equally important barrier to appropriate care is insurance coverage. This includes a lack of insurance (Drainoni et al., 2006; Reichard et al., 2017), and inadequate insurance coverage as PWD may need more medical services and time from a health care provider than someone without a disability (Lagu et al., 2022). Low reimbursement rates for the care a PWD needs can impact the quality of a health care visit and the health care outcomes of the patient (Lagu et al., 2013, 2022).

Health Care Provider Attitudes, Knowledge, and Skills

In addition to the structural barriers to health care, there are also attitudinal barriers to health care access for PWD. It has been suggested that the explicit and implicit biases of health care providers toward PWD may impact the quality and quantity of the health care services they receive (Chapman et al., 2013; VanPuymbrouck et al., 2020). These biases include negative opinions about the quality of life of PWD (Albrecht & Devlieger, 1999; Gallegos, 2021; Lagu et al., 2022) as documented in a survey of 714 practicing physicians (Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Agaronnik, et al., 2021). More than 80% of the physicians reported that persons with significant disabilities have a decreased quality of life than those without disabilities, thus suggesting a bias about providing aggressive medical care or treatment when needed to a PWD, compared to persons without disabilities.

More important findings from this study revealed that only 41% of respondents were very confident in their own ability to provide the same quality of care to PWD as to those without disabilities, and 36% reported knowing little or nothing about their legal responsibilities under the Americans with Disabilities Act (ADA). More than half reported feeling they were at risk of being sued under ADA (Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Agaronnik, et al., 2021). These findings are supported by multiple studies that have reported that health care providers do refer PWD to other health care providers (Chiu et al., 2017; Frost et al., 2015; Grabois et al., 1999; Lagu et al., 2022), refuse treatment (Lagu et al., 2013, 2022; Pharr, 2014), ask patients to provide their own assistance for transfers (Frost et al., 2015; Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Donelan, et al., 2021; Pharr, 2014), ask patients to provide their own weight (Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Donelan, et al., 2021; Story et al., 2009) or perform physical exams with patients remaining in wheelchairs or mobility devices (Agaronnik et al., 2019; Mele et al., 2005; Morris et al., 2017; Pharr, 2013, 2014; Pharr et al., 2019). It has been suggested that many of these attitudes and beliefs emanate from a lack of knowledge and skill about PWD (Lagu et al.,2022).

Last, the quality of communication between patient and provider has also been cited as a barrier to quality health care by PWD (Chiu et al., 2017; Marlow et al., 2019; Lagu et al., 2022). An analysis of patient-provider communication using data from the Health Information National Trends Survey (Marlow et al., 2019, p. 736) revealed that PWD were less likely to report their health care provider gave them a chance to ask questions, addressed their feelings, involved them in decisions, provided clear explanation, ensured they understood the next steps in their care and gave them enough time during the visit. PWD have reported delaying or forgoing medical care due to lack of disability competence, including communication, among health care providers (Krahn & Drum, 2007; NCD, 2009).

Purpose of the Study

Physical barriers, negative attitudes, and lack of knowledge about PWD among health care providers have direct implications for the health care provided to PWD and their subsequent health outcomes. According to 2021 BRFSS data as reported in the Disability and Health Data System, 23.9% of adults in Connecticut (CT) have at least one disability, and more PWD are obese, current smokers, have heart disease, and have diabetes compared to persons without disabilities. Additionally, fewer PWD can identify a personal health care provider, compared to those without disabilities (Centers for Disease Control and Prevention [CDC], 2021). The purpose of this study was to examine the barriers to health care experienced by PWD living in CT through a survey developed in collaboration with individuals with disabilities and disability advocates that could be completed by a PWD or a caregiver of a PWD. Findings from this study add support to the existing national data on disparities in health care access and quality of care for those with disabilities as well as the data for CT and echo the need for systems-level change.

Methods

Participant Characteristics

Survey invitations went out to PWD and families living in CT who were on a mailing list at the UConn UCEDD. Survey responses were received from 110 participants during a 3-month period in 2022 when the survey was open. Three individuals responded they did not want to take the survey, and 29 surveys were not complete. A total of 78 surveys were included in the final analysis. Forty-four percent of the respondents were 55 or older, 35% were 35-54 years old, and 19% were 18-34 years old (see Table 2). The sample was approximately equal in gender (53% male, 47% female). Most of the respondents’ reported motor difficulties (58%). Descriptions of respondents’ disability status are shown in Table 2.

Survey and Analysis

Graduate students from the UConn Leadership Education in Neurodevelopmental and related Disabilities (LEND) program participated in the survey design and piloting of questions. The students completed a literature review and interviewed seven informants for guidance on the development of plain language survey questions. The informants were PWD and active members of two disability advocacy organizations in CT. Table 1 provides a comparison of the BRFSS disability items and the adapted plain language items and additions to describe disability. Permission to adapt a publicly available measure, Facility Site Review: Physical Accessibility Review Survey by Mudrick et al. (2012, 2019) was also received. The survey questions were then reviewed by LEND students and LEND faculty and staff for readability, understandability, spelling, and grammar. Feedback was used to further revise the survey before it was uploaded into Qualtrics.

The final survey instrument was comprised of 25 questions divided into 5 sections. These sections were (1) About you; (2) Your disability; (3) Your health care visits; (4) Your health care visits for x-rays or blood work; and (5) Your feedback and comments. The wording for survey items was altered depending on whether the PWD was taking the survey or if someone was completing the survey on behalf of a PWD (this is described in further detail below). An additional section contained questions for those who use mobility devices. Based on feedback during survey development, the survey took 15 minutes to complete. Most questions required respondents to click on a “yes,” “no,” or “I don’t know” as an answer. Some questions asked respondents for more information using a textbox for responses. These textboxes appeared on the survey page using display logic based on the “yes,” “no,” or “I don’t know” response. Some questions asked respondents to select all applicable answer options. The final survey instrument received the following overall scores on readability from Microsoft Word: 80.5 Flesch Reading Ease, 4.6 Flesch-Kincaid Grade Level, and 5.3% passive sentences (Microsoft Corp, 2022).

The study was approved by the UConn Health Institutional Review Board (IRB). A snowball recruitment method was used to distribute the survey (Morgan, 2008). The survey was distributed statewide via email with the survey link by the UConn UCEDD to PWD, caregivers, direct care staff, advocacy organizations, disability organizations and others to share the survey. The survey was also advertised on the UConn UCEDD social media sites. The email invitation was written using plain language and described the study, purpose, and procedures. If they wanted to continue, respondents clicked on the link to the survey embedded in the invitation. A choice was then given to the respondents to identify as having a disability, or being someone who was completing the survey on behalf of a PWD. If in the second category of respondent, they had to identify who they were from a list of choices that included parent, family, friend, unpaid caregiver for a person with a disability, staff member for a person with a disability, or other. Specifically, the invitation invited people who identified as having a disability, or someone who knew a PWD to complete the survey.

Data were collected using Qualtrics. Data collected from PWD (n = 62) and from respondents completing the survey on behalf of PWD (n = 16) were combined into one dataset in Excel and is presented in aggregate. For example, survey item 1 for PWD asks “how old are you?” and survey item 1 for respondents completing the survey on behalf of PWD asks “how old are they?” The data from these two items were combined to create the variable “age” in the final dataset.” Descriptive statistics were calculated using SPSS (IBM Corp, 2017).

Results

Health Care Access

Most respondents reported that they had a health care visit in the past year (73%). Most (74%) reported that they have a doctor who knows them that they can go to when they are sick or hurt, and 44% reported that they have a clinic they can go to where the staff knows them. A majority (73%) reported going to a doctor’s office in the community, 51% had doctors’ visits over the phone/computer. Half (47%) had also received care at a hospital or health center in the past year. In addition to the listed health care visits, 23% of respondents reported receiving health care in other places such as physical therapy centers, rehab centers, mental health centers, specialist visits, and at their residence (e.g., COVID vaccinations). A third of the respondents reported going to five or more doctors in the past year.

Many respondents (40%) reported attending health care visits alone, while others reported having others attend with them for assistance (37%). Some respondents (12%) reported other, with 6% reporting staff or a PCA assisting them and 5% reporting that it depended on the visit (e.g., sometimes they go alone, sometimes they go with a parent/staff). Most respondents (56%) take a taxi, uber, etc., or have parents or family member drive them to health care visits. An additional 6% of respondents reported “other,” which included rides from other caregivers, personal vans, Sunshine Wheels (a CT accessible transportation company), or an ambulance.

Almost half of the respondents (47%) reported going to a health care provider when they were sick during the past year while 23% did not, even though they were sick. Reasons cited for not getting health care when sick were COVID 19, including fear of getting COVID or limited appointments because of COVID (9%), feeling that a visit to a health care provider would not be worth the trip or the hassle (8%). Most respondents (54%) reported that they did not have problems getting appointments to see health care providers when needed, but 21% reported issues getting needed appointments because of a lack of availability, challenges with offices phone/email scheduling systems, and transportation difficulties. Almost half of the respondents (42%) reported being able to use tablets or computers to access health care visits, but 27% reported problems using electronic devices. Reasons for these included challenges while using technology, general difficulties using computers or tablets for virtual visits, and not liking using tablets or computers for health care visits. More than half of the respondents (56%) reported that they did not have any problems with their insurance in the past year, and 17% reported deficits in coverage for needed services and insurance costs being unaffordable.

Barriers to Accessible Medical Diagnostic Equipment

Respondents reported barriers to needed MDE (see Table 3). Over half (54%) reported needing an exam table that moved up and down to get on and off it safely. Similarly, over half (54%) also reported needing an office that was accessible and did not require stairs to enter. Half (50%) also required an office that could accommodate a wheelchair. Other MDE reported as being needed by respondents included accessible scales (41%), electronic lifts (31%), and access to care in a quiet, uncrowded office (17%). Only a third of the respondents (33%) reported sometimes an exam table that moved up and down to accommodate them was available, and 21% reported that there was never a table available for them that moved up and down. A third of the respondents (32%) reported they needed others to help them on and off the table, and 21% reported that they needed a lift to get on an exam table; 18% stated there was no availability of an electronic lift to move them from their wheelchair or other chair on and off an exam table are never available for them when they needed it. A third (33%) reported that there was never a scale available to weigh them in their wheelchair, scooter, or walker.

Almost half (41%) of the sample reported having problems being able to use equipment or machines because of their disability, and a third of the respondents reported feeling anxious and unsafe using MDE such as X-ray machines, MRI machines, CT scan machines, and other MDE (32%). Reasons for this included the restrictions because of their disability, or having other medical issues that complicated the use of MDE (13%). The female PWDs (47%) reported that they needed a special mammogram machine that moves up and down (26%), and an additional 26% reported that they needed a special exam table for physical exams/Pap tests to be conducted. Lastly, 5% of the sample experienced untrained or unprepared staff who created barriers to the use of MDE. A third of the respondents (36%) reported not having a medical test done because of their disability.

Of the 50% of PWD who reported using a mobility device such as a wheelchair, power chair, motorized scooter, walker, cane, or something else, 79% reported that they needed help to transfer to an exam table (e.g., from other people or from a lift). Further, 69% reported staying in their chairs for physical exams, 41% reported staying in their chairs for dental cleanings, 33% stayed in their chairs for medical procedures, and 41% stayed in their chairs for dental procedures. Over half of these respondents (54%) did not receive any explanation about why they were not transferred out of their chair to an exam table.

Health Care Provider Communication, Attitude and Knowledge

Almost half of the respondents (43%) reported problems with communicating with their health care providers (see Table 3). Approximately 31% reported their health care provider did not understand what they were telling them, with 15% reporting that their health care provider did not listen or understand them (e.g., health care provider not taking the time to listen, looking only to the caregiver for communication, or not understanding their disability). An additional 12% reported communication difficulties related to their disability as the cause of health care providers not understanding what they were telling them.

Some respondents (39%) reported that health care providers had a negative attitude toward them during visits, which was demonstrated by not listening to their concerns or being dismissive towards them (12%), not addressing them directly (6%), seeming nervous or uncomfortable with providing care (4%), and using offensive/outdated terminology when interacting with them (3%). A third of the respondents (31%) reported not being able to understand the health care provider’s explanations for medical care.

Most respondents (61%) reported that they did not think that their health care providers and other staff have had training about PWD. Roughly 22% of respondents reported that their health care providers and staff did not seem to have knowledge about PWD and their health care needs, 10% reported negative experiences with health care providers, and 4% reported being treated as inferior. Most respondents (65%) felt health care providers and staff should have training about the needs of PWD, with 27% reporting that this would help health care providers provide better and more comprehensive care for PWD. Other respondents (15%) felt training would help their doctors become better providers, and 10% thought it would help to ensure PWD were treated as equals.

Discussion

Findings from this survey indicate that PWD in CT experience similar barriers to health care access as PWD across the US (Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Donelan, et al., 2021; Lagu et al., 2022). Respondents who reported needing accessible medical equipment also reported that it was not always available, and some said it was never available to them, which is also consistent with national studies with PWD (Iezzoni et al., 2010, 2022; Mitra et al., 2017; Story et al., 2009). Further, the results from this study support national findings about the lack of accessible exam tables and lifts resulting in PWDs remaining in wheelchairs or other mobility devices during appointments and procedures, a possible deterrent to quality care (Agaronnik et al., 2019; Frost et al., 2015; Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Donelan, et al., 2021).

The interpersonal barriers to care reported in this study are also like the findings of national studies with PWD (Chiu et al., 2017; Marlow et al., 2019). That is, PWD reported challenges in being understood by providers, and they also experienced challenges understanding their providers. Most respondents reported that their doctor, staff, and other health care providers should have training about the needs of PWD. These findings support those from national surveys on providers’ knowledge and training in disability (Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Agaronnik, et al., 2021; Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Donelan, et al., 2021; Iezzoni et al., 2022; Lagu et al., 2022; Morris et al., 2017).

Recommendations to Improve Health Care Access

Accessible Medical Diagnostic Equipment

The ADA and Section 504 of the Rehabilitation Act of 1973 require accessible health care facilities and offices, including parking lots, exterior entrances, and restrooms for PWD (Iezzoni & Pendo, 2018). Additionally, Section 4203 of the ACA required the Architectural and Transportation Barriers Compliance Board, also known as the U.S. Access Board, to work with the FDA to develop accessibility standards for MDE, which went into effect February 8, 2017 (Standards for Accessible Medical Diagnostic Equipment, 2017). However, these standards have not yet been formalized by the Department of Justice (DOJ) and codified (Nondiscrimination on the Basis of Disability, 2017).

In response, many organizations and governmental agencies have developed and disseminated resources and checklists for providers, administrators, and staff to learn more about accessibility and accommodations for health care settings (ADA National Network, 2016; Office of Minority Health, 2021; Singer et al., 2017). While useful, these tools remain as guidelines and not as requirements and they are not currently legally enforceable. To assure compliance with the Accessibility Standards for MDE, the US DOJ must issue regulations to enforce the standards. It has further been suggested that banning the manufacturing and sale of inaccessible MDE could facilitate the purchase and use of accessible equipment, like the federal regulations for unsafe child safety seats (Lagu et al., 2015).

CT recently passed Public Act No. 22-58 (C.G.S. § 19a-490dd, 2022), which requires health care facilities to take into consideration the US Access Board’s Accessibility Standards when purchasing MDE beginning January 1, 2023. While the Public Act is a positive step forward, it does not require existing equipment to be made accessible, nor does it require facilities to purchase new equipment that meets accessibility standards. Until this occurs, PWDs in CT will continue to report a lack of accessible MDE, which will negatively impact their health outcomes.

Communication to and from Health Care Providers

Electronic medical records (EMR) are one mechanism that can be used to improve the communication and other issues identified by PWD. EMRs can include information about a PWD’s need for accommodations and modifications during a health care visit, as well as their preferred communication mode. Several studies have demonstrated that collecting disability status as part of new patient registration for primary and specialty care is an effective way to enhance communication for PWD, and PWD have reacted favorably to using this mechanism (Halkides et al., 2022; Morris et al., 2021; Mudrick et al., 2020; C. Tyler et al., 2010; Varadaraj et al., 2022). The Disability Equity Collaborative (2022) issued an implementation guide with training materials for frontline staff about how to systematically collect disability and accommodation status as part the EMR. This practice should be expanded and evaluated as a strategy to improve the quality of a health care visit for PWD.

Medical School Training about Persons with Disabilities

Calls for disability competence in health care training are numerous (e.g., Bowen et al., 2020; Havercamp et al., 2021; Stillman et al., 2022; Turk & Mitra, 2022a). Disability competence, sometimes referred to as “disability conscious” [medical] education, needs to address biases, address provider gaps in knowledge of the ADA, accommodations, and accessible medical equipment, include disability cultural competence and etiquette, increase provider comfort, and change the culture of clinical office visits (Agaronnik et al., 2019; Doebrich et al., 2020; Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Agaronnik, et al., 2021; Iezzoni et al., 2022; Lagu et al., 2014). Quality, multi-modal, longitudinal education is needed for current and future health care providers on disability competence at all career stages (e.g., Amir et al., 2022; Griffen & Havercamp, 2020; NCD, 2022; Turk & Mitra, 2022a, 2022b). Section 5307 of the ACA requires the development and dissemination of model disability cultural competency curricula for health care training programs and continuing education; however, the curricula are not mandated (NCD, 2019b).

Revising accreditation standards for programs is one approach to requiring health care programs to embed disability competence into training. The Commission on Dental Accreditation (CODA), the accrediting body for dental, advanced dental, and allied dental education programs, now requires all U.S. dental schools to include patients with intellectual and developmental disabilities in their training curricula for predoctoral dental, orthodontics, dental hygiene, and dental assistant programs (NCD, 2019a). This model has not been adopted across education programs for other health care providers, most notably medical schools.

Despite the American Medical Association’s adopted Resolution 428 to improve the care of PWD and the continued advocacy of disability groups, the Liaison Committee on Medical Education (LCME), the accrediting body of the Association of American Medical Colleges (AAMC), has not adopted any requirements for developmental disability content as part of accreditation standards, nor adopted any policy that specifically mandates education on developmental disability, similar to CODA dental programs (NCD, 2019b). Recently, the AAMC has developed competencies for diversity, equity and inclusion for learners entering residency, entering clinical practice, and faculty physicians as well as curricular models for undergraduate medical education (American Association of Medical Colleges, 2022), yet disability is not specifically stated as a competency.

Recent attempts to develop and revise curriculum for medical and dental students have been facilitated by the American Academy of Developmental Medicine and Dentistry’s (AADMD) National Curriculum Initiative in Developmental Medicine. Medical schools may apply for grant funding to provide educational opportunities for medical students to develop disability competence (AADMD, 2021). Examples of practices used in the funded programs, as well as others who have embedded disability into health care education, include teaching with PWD as instructors or standardized patients (Alerte et al., 2021; Long-Bellil et al., 2011; Sheppard et al., 2017; Siebens et al., 2004; Woodard et al., 2012), providing opportunities for student participation on home visits/school observations, advocacy training and elevating and increasing the number and visibility of medical students and health care providers who have disabilities (Kaundinya & Schroth, 2022). Unfortunately, implementing disability content and competence into medical school curriculum is variable, and often voluntary. In addition, systemic barriers such as competing curricular requirements influence curricular enhancements on disability (Doebrich et al., 2020).

Continuing Education for Health Care Providers About Persons with Disabilities

In addition to training future providers, education is needed for community-based health care providers, office managers, and practice administrators about the need for accessible MDE and other interpersonal, knowledge, and skill-based barriers to quality care for PWD. Until continuing education requirements for health care providers mandates course work and credits about disabilities, PWD will continue to experience disparities in health care access and care.

Regarding accessible MDE, those who are responsible for purchasing equipment must be educated about the availability of such equipment, the importance of acquiring it, and opportunities for financial support for purchasing MDE (Pharr, 2013; Pharr et al., 2019). Further, the presence of accessible MDE itself is not enough to ensure it is used consistently and safely (Iezzoni et al., 2022; Morris et al., 2017); knowledge and skills are needed to use the equipment appropriately (Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Donelan, et al., 2021; Pharr, 2013, 2014). Training on the use of accessible MDE could address provider concerns of about injuring patients, address patient concerns about their own safety, and benefit both as accessible MDE has been shown to reduce injury (Fragala, 2016; Fragala et al., 2017; Iezzoni et al., 2022; Lagu et al., 2022).

Limitations

This survey was developed with considerable input from PWD and assessed for accessibility. However, it is possible that PWD may not be represented in the data due to the survey language, survey distribution, or other barriers to access. For ethical and IRB purposes, we were not able to collect a respondent’s geographic location (town, county, or voting jurisdiction). Geographic location would allow us to assess our statewide response and distribution. It would also allow us to work with local and community-based organizations, leaders, and policymakers to address the barriers reported through collaborative partnerships, advocacy, and policy change. Additionally, the use of snowball sampling as a method of convenience may limit the generalizability of the findings due to potential selection bias. Future research would benefit from the use of more probability-based sampling measures, as well as the collection of demographic characteristics and socioeconomic status variables (e.g., race/ ethnicity, education level, employment, income, or health insurance) that may be related to access and use of health care services.

Conclusion

The study indicated that PWD in CT experience barriers to health care including the accessibility of medical equipment and health care that are reported on the national level. The data described provides multiple directions to conduct further research, provide education and training, and advocate for systems change. Federal enforcement of the MDE standards, state level compliance of the standards, and requirements of health care training programs to educate providers in disability competency are needed. If the NCD (2022) framework was universally adopted and implemented, health care access and outcomes for PWD would improve.

References

ADA National Network. (2016). ADA checklist for existing facilities. https://www.adachecklist.org/doc/fullchecklist/ ada-checklist.pdf

Agaronnik, N., Campbell, E. G., Ressalam, J., & Iezzoni, L. I. (2019). Accessibility of medical diagnostic equipment for patients with disability: Observations from physicians. Archives of Physical Medicine and Rehabilitation, 100(11), 2032–2038. https://doi.org/10.1016/j.apmr.2019.02.007

Akobirshoev, I., Vetter, M., Iezzoni, L. I., Rao, S. R., & Mitra, M. (2022). Delayed medical care and unmet care needs due to the COVID-19 pandemic among adults with disabilities in the US. Health Affairs, 41(10), 1505-1512. https://doi.org/10.1377/hlthaff.2022.00509

Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: high quality of life against all odds. Social Science & Medicine, 48(8), 977–988. https://doi.org/10.1016/s0277-9536(98)00411-0

Alerte, A., Lutz, T. M., Keder, R., & Bruder, M. B. (2021). Caring for children with disabilities in the medical home: small group, distance-learning, case-based curriculum [unpublished manuscript]. University of Connecticut Center for Excellence in Developmental Disabilities Education, Research, & Service.

American Academy of Developmental Medicine and Dentistry. (2021). National curriculum initiative in developmental medicine. https://www.aadmd.org/ncidm

American Association of Medical Colleges. (2022, July). Diversity, equity, and inclusion competencies across the learning continuum. AAMC New and Emerging Areas in Medicine Series. Washington, DC.

Amir, N., Smith, L. D., Valentine, A. M., Mitra, M., Parish, S. L., & Moore Simas, T. A. (2022). Clinician perspectives on the need for training on caring for pregnant women with intellectual and developmental disabilities. Disability and Health Journal, 15(2), 101262. https://doi.org/10.1016/j.dhjo.2021.101262

Assi, L., Deal, J. A., Samuel, L., Reed, N. S., Ehrlich, J. R., & Swenor, B. K. (2022). Access to food and health care during the COVID-19 pandemic by disability status in the United States. Disability and Health Journal, 15(3), 101271. https://doi.org/10.1016/j.dhjo.2022.101271

Assistant Secretary for Planning and Evaluation. (2011, October 30). U. S. Department of Health and Human Services Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status. U.S. Department of Health and Human Services. https://aspe.hhs.gov/reports/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-disability-0

Bowen, C. N., Havercamp, S. M., Bowen, S. K., & Nye, G. (2020). A call to action: Preparing a disability-competent health care workforce. Disability and Health Journal, 13(4), 100941. https://doi.org/10.1016/j.dhjo.2020. 100941

Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Division of Human Development and Disability. (2021). Disability and Health Data System (Connecticut) [Data set]. https://dhds.cdc.gov

Chapman, E. N., Kaatz, A., & Carnes, M. (2013). Physicians and implicit bias: how doctors may unwittingly perpetuate health care disparities. Journal of General Internal Medicine, 28(11), 1504–1510. https://doi.org/10.1007/ s11606-013-2441-1

Chiu, C., Bishop, M., Pionke, J. J., Strauser, D., & Santens, R. L. (2017). Barriers to the accessibility and continuity of health-care services in people with multiple sclerosis: A literature review. International Journal of MS Care, 19(6), 313–321. https://doi.org/10.7224/1537-2073.2016-016

Cochran, A. L. (2020). Impacts of COVID-19 on access to transportation for people with disabilities. Transportation Research Interdisciplinary Perspectives, 8, 100263.  https://doi.org/10.1016/j.trip.2020.100263

Conn. Gen. Stat., Sec. 19a-490dd (2022). https://www.cga.ct.gov/current/pub/chap_368v.htm#sec_19a-490dd

Cree, R. A., Okoro, C. A., Zack, M. M., & Carbone, E. (2020). Frequent mental distress among adults, by disability status, disability type, and selected characteristics – United States, 2018. MMWR: Morbidity and Mortality Weekly Report, 69(36), 1238–1243. https://doi.org/10.15585/mmwr.mm6936a2

Disability Equity Collaborative. (2022). Documenting disability status in electronic health records: An implementation guide. https://www.disabilityequitycollaborative.org/healthcare-resources/#documenting-disability-status

Dixon-Ibarra, A., & Horner-Johnson, W. (2014). Disability status as an antecedent to chronic conditions: National Health Interview Survey, 2006–2012. Preventing Chronic Disease, 11, E15. https://doi.org/10.5888/pcd11. 130251

Doebrich, A., Quirici, M., & Lunsford, C. (2020). COVID-19 and the need for disability conscious medical education, training, and practice. Journal of Pediatric Rehabilitation Medicine, 13(3), 393–404. https://doi.org/ 10.3233/PRM-200763

Drainoni, M.-L., Lee-Hood, E., Tobias, C., Bachman, S. S., Andrew, J., & Maisels, L. (2006). Cross-disability experiences of barriers to health-care access: Consumer perspectives. Journal of Disability Policy Studies, 17(2), 101-115. https://doi.org/10.1177/10442073060170020101

Drum, C. E., Krahn, G., Culley, C., & Hammond, L. (2005). Recognizing and responding to the health disparities of people with disabilities. Californian Journal of Health Promotion, 3(3), 29-42. https://doi.org/10.32398/ cjhp.v3i3.647

Fragala G. (2016). Reducing occupational risk to ambulatory caregivers. Workplace Health & Safety, 64(9), 414–419. https://doi.org/10.1177/2165079916642776

Fragala, G., Labreche, M., & Wawzynieki, P. (2017). Benefits achieved for patients through application of height-adjustable examination tables. Journal of Patient Experience, 4(3), 138-143. https://doi.org/10.1177/ 2374373517706835

Frost, K. L., Bertocci, G., Stillman, M. D., Smalley, C., & Williams, S. (2015). Accessibility of outpatient healthcare providers for wheelchair users: Pilot study. Journal of Rehabilitation Research and Development, 52(6), 653–662. https://doi.org/10.1682/JRRD.2015.01.0002

Gallegos, A. J. (2021, April 1). Misperceptions of people with disabilities lead to low-quality care: how policy makers can counter the harm and injustice. Health Affairs, https://www.healthaffairs.org/do/10.1377/forefront. 20210325.480382

Grabois, E. W., Nosek, M. A., & Rossi, C. D. (1999). Accessibility of primary care physicians’ offices for people with disabilities: An analysis of compliance with the Americans with Disabilities Act. Archives of Family Medicine, 8(1), 44. https://doi.org/10.1001/archfami.8.1.44

Griffen, A., & Havercamp, S. (2020). Preparing a disability-competent workforce. In D. J. Lollar, W. Horner-Johnson, & K. Froehlich-Grobe (Eds.), Public health perspectives on disability: Science, social justice, ethics, and beyond (pp. 341-361). Springer. https://doi.org/10.1007/978-1-4419-7341-2

Halkides, H., James, T. G., McKee, M. M., Meade, M. A., Moran, C., & Park, S. (2022). Spotlighting disability in a major electronic health record: Michigan Medicine’s disability and accommodations tab. JMIR Formative Research, 6(12), e38003. https://doi.org/10.2196/38003

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

Horner-Johnson, W., Dobbertin, K., & Iezzoni, L. I. (2015). Disparities in receipt of breast and cervical cancer screening for rural women ages 18 to 64 with disabilities. Women’s Health Issues, 25(3), 246-253. https://doi.org/ 10.1016/j.whi.2015.02.004

IBM Corp. (2017). IBM SPSS statistics for windows, version 25.0. Author.

Iezzoni, L. I., & Pendo, E. (2018). Accessibility of medical diagnostic equipment: Implications for people with disability. The New England Journal of Medicine, 378(15), 1371–1373. https://doi.org/10.1056/ NEJMp1800606

Iezzoni, L. I., Kilbridge, K., & Park, E. R. (2010). Physical access barriers to care for diagnosis and treatment of breast cancer among women with mobility impairments. Oncology Nursing Forum, 37(6), 711–717. https://doi.org/10.1188/10.ONF.711-717

Iezzoni, L. I., Kurtz, S. G., & Rao, S. R. (2014). Trends in U.S. adult chronic disability rates over time. Disability and Health Journal, 7(4), 402–412. https://doi.org/10.1016/j.dhjo.2014.05.007

Iezzoni, L. I., Kurtz, S. G., & Rao, S R. (2015). Trends in pap testing over time for women with and without chronic disability. American Journal of Preventive Medicine, 50(2), 210-219. https://doi.org/10.1016/j.amepre. 2015.06.031

Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N. D., Donelan, K., Lagu, T., & Campbell, E. G. (2021). Physicians’ perceptions of people with disability and their health care. Health Affairs, 40(2), 297-306. https://doi.org/10.1377/hlthaff.2020.01452

Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N. D., Lagu, T., Pendo, E., & Campbell, E. G. (2022). US Physicians’ knowledge about the Americans with Disabilities Act and accommodation of patients with disability. Health Affairs, 41(1), 96-104. https://doi.org/10.1377/hlthaff.2021.01136

Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Donelan, K., Agaronnik, N., Lagu, T., & Campbell, E. G. (2021). Use of accessible weight scales and examination tables/chairs for patients with significant mobility limitations by physicians nationwide. Joint Commission Journal on Quality and Patient Safety, 47(10), 615–626. https://doi.org/10.1016/j.jcjq.2021.06.005

Iezzoni, L. I., Wint, A. J., Smeltzer, S. C., & Ecker, J. L. (2015). Physical accessibility of routine prenatal care for women with mobility disability. Journal of Women’s Health, 24(12), 1006–1012. https://doi.org/10.1089/jwh.2015. 5385

Kaundinya, T., & Schroth, S. (2022). Dismantle ableism, accept disability: Making the case for anti-ableism in medical education. Journal of Medical Education and Curricular Development, 9. https://doi.org/10.1177/ 23821205221076660

Krahn, G. L., & Drum, C. E. (2007). Translating policy principles into practice to improve health care access for adults with intellectual disabilities: a research review of the past decade. Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 160–168. https://doi.org/10.1002/mrdd.20149

Krahn, G. L., Walker, D. K., & Correa-De-Araujo, R. (2015). Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health, 105(Suppl 2), S198–S206. https://doi.org/10.2105/ AJPH.2014.302182

Lagu, T., Griffin, C., & Lindenauer, P. K. (2015). Ensuring access to health care for patients with disabilities. JAMA Internal Medicine, 175(2), 157–158. https://doi.org/10.1001/jamainternmed.2014.6740

Lagu, T., Hannon, N. S., Rothberg, M. B., Wells, A. S., Green, K. L., Windom, M. O., Dempsey, K. R., Pekow, P. S., Avrunin, J. S., Chen, A., & Lindenauer, P. K. (2013). Access to subspecialty care for patients with mobility impairment: a survey. Annals of Internal Medicine, 158(6), 441–446. https://doi.org/10.7326/0003-4819-158-6-201303190-00003

Lagu, T., Haywood, C., Reimold, K., DeJong, C., Walker Sterling, R., & Iezzoni, L. I. (2022). ‘I am not the doctor for you’: Physicians’ attitudes about caring for people with disabilities. Health Affairs, 41(10), 1381395. https://doi.org/10.1377/hlthaff.2022.00475

Lagu, T., Iezzoni, L. I., & Lindenauer, P. K. (2014). The aces of access—improving care for patients with disabilities. New England Journal of Medicine, 370(19), 1847-1851. https://doi.org/10.1056/NEJMsb1315940

Long-Bellil, L. M., Robey, K. L., Graham, C. L., Minihan, P. M., Smeltzer, S. C., Kahn, P., & Alliance for Disability in Health Care Education (2011). Teaching medical students about disability: the use of standardized patients. Academic Medicine, 86(9), 1163–1170. https://doi.org/10.1097/ACM.0b013e318226b5dc

Lund, E. M., Forber-Pratt, A. J., Wilson, C., & Mona, L. R. (2020). The COVID-19 pandemic, stress, and trauma in the disability community: A call to action. Rehabilitation Psychology, 65(4), 313–322. https://doi.org/10.1037/ rep0000368

Mahmoudi, E., & Meade, M. A. (2015). Disparities in access to health care among adults with physical disabilities: analysis of a representative national sample for a ten-year period. Disability and Health Journal, 8(2), 182–190. https://doi.org/10.1016/j.dhjo.2014.08.007

Maragh-Bass, A. C., Griffin, J. M., Phelan, S., Finney Rutten, L. J., & Morris, M. A. (2018). Healthcare provider perceptions of accessible exam tables in primary care: Implementation and benefits to patients with and without disabilities. Disability and Health Journal, 11(1), 155–160. https://doi.org/10.1016/j.dhjo.2017. 04.005

Marlow, N. M., Samuels, S. K., Jo, A., & Mainous, A. G., III. (2019). Patient-provider communication quality for persons with disabilities: A cross-sectional analysis of the Health Information National Trends Survey. Disability and Health Journal, 12(4), 732–737. https://doi.org/10.1016/j.dhjo.2019.03.010

Mele, N., Archer, J., & Pusch, B. D. (2005). Access to breast cancer screening services for women with disabilities. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 34(4), 453–464. https://doi.org/ 10.1177/0884217505276158

Microsoft Corp. (2022). Microsoft Office 365. Microsoft Corp.

Mitra, M., Bogen, K., Long-Bellil, L. M., & Heaphy, D. (2011). Unmet needs for home and community-based services among persons with disabilities in Massachusetts.  Disability and Health Journal, 4(4), 219–228. https://doi.org/10.1016/j.dhjo.2011.08.003

Mitra, M., Smith, L. D., Smeltzer, S. C., Long-Bellil, L. M., Sammet Moring, N., & Iezzoni, L. I. (2017). Barriers to providing maternity care to women with physical disabilities: Perspectives from health care practitioners. Disability and Health Journal, 10(3), 445–450. https://doi.org/10.1016/j.dhjo.2016.12.021

Morgan, D. L. (2008). Snowball sampling. In L. Given (Ed.), The SAGE encyclopedia of qualitative research methods (pp. 816-817). SAGE

Morris, M. A., Hamer, M. K., Eberle, K., Jensen, K. M., & Wong, A. A. (2021). Implementation of collection of patients’ disability status by centralized scheduling. Joint Commission Journal on Quality and Patient Safety, 47(10), 627–636. https://doi.org/10.1016/j.jcjq.2021.05.007

Morris, M. A., Maragh-Bass, A. C., Griffin, J. M., Finney Rutten, L. J., Lagu, T., & Phelan, S. (2017). Use of accessible examination tables in the primary care setting: A survey of physical evaluations and patient attitudes. Journal of General Internal Medicine, 32(12), 1342–1348. https://doi.org/10.1007/s11606-017-4155-2

Mudrick, N. R., Breslin, M. L., Kyrian, N., & Swager, L.A. C. (2020). Can disability accommodation needs stored in electronic health records help providers prepare for patient visits? A qualitative study. BMC Health Services Research, 20(1), 958. https://doi.org/10.1186/s12913-020-05808-z

Mudrick, N. R., Breslin, M. L., Liang, M., & Yee, S. (2012). Physical accessibility in primary health care settings: results from California on-site reviews. Disability and Health Journal, 5(3), 159–167. https://doi.org/10.1016/ j.dhjo.2012.02.002

Mudrick, N. R., Swager, L. C., & Breslin, M. L. (2019). Presence of accessible equipment and interior elements in primary care offices. Health Equity, 3(1), 275–279. https://doi.org/10.1089/heq.2019.0006

Nagarajan, N., Varadaraj, V., Chanes-Mora, P., Rosenblum, L. P., & Swenor, B. K. (2022). Concerns on healthcare access, utilization, and safety due to COVID-19 among American adults with vision loss. Disability and Health Journal, 15(3), 101277. https://doi.org/10.1016/j.dhjo.2022.101277

National Council on Disability (NCD). (2009). The current state of health care for people with disabilities. https://www.ncd.gov/publications/2009/Sept302009

National Council on Disability (NCD). (2019a, August 14). At NCD’s recommendation, all U. S. dental schools will train students to manage treatment of people with intellectual, developmental disabilities. https://www.ncd.gov/2019/08/14/at-ncds-recommendation-all-u-s-dental-schools-will-train-students-to-manage-treatment-of-people-with-intellectual-developmental-disabilities/

National Council on Disability (NCD). (2019b, December 12). NCD LCME 2nd response letter.  https://www.ncd.gov/ letters/2019-12-12-ncd-lcme-2nd-response-letter/

National Council on Disability (NCD). (2022, February). Health equity framework for people with disabilities. https://ncd.gov/publications/2022/health-equity-framework

Nondiscrimination on the Basis of Disability; Notice of Withdrawal of Four Previously Announced Rulemaking Actions, 82 F.R. 60932. (proposed December 26, 2017) (to be codified 28 C.F.R. § 35). https://www.federalregister.gov/documents/2017/12/26/2017-27510/nondiscrimination-on-the-basis-of-disability-notice-of-withdrawal-of-four-previously-announced

Office of Minority Health. (2021, March). Modernizing health care to improve physical accessibility. U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/OMH-Modernizing-Health-Care-Physical-Accessibility.pdf

Okoro, C. A., Hollis, N. D., Cyrus, A. C., & Griffin-Blake, S. (2018). Prevalence of disabilities and health care access by disability status and type among adults—United States, 2016. MMWR: Morbidity and Mortality Weekly Report, 67(32), 882–887. https://doi.org/10.15585/mmwr.mm6732a3

Pharr, J. (2013). Accessible medical equipment for patients with disabilities in primary care clinics: Why is it lacking? Disability and Health Journal, 6(2), 124–132. https://doi.org/10.1016/j.dhjo.2012.11.002

Pharr, J. R. (2014). Accommodations for patients with disabilities in primary care: A mixed methods study of practice administrators. Global Journal of Health Science, 6(1), 23–32. https://doi.org/10.5539/gjhs.v6n1p23

Pharr, J. R., James, T., & Yeung, Y. L. (2019). Accessibility and accommodations for patients with mobility disabilities in a large healthcare system: How are we doing? Disability and Health Journal, 12(4), 679–684. https://doi.org/10.1016/j.dhjo.2019.03.008

Reichard, A., Stolzle, H., & Fox, M. H. (2011). Health disparities among adults with physical disabilities or cognitive limitations compared to individuals with no disabilities in the United States. Disability and Health Journal, 4(2), 59–67. https://doi.org/10.1016/j.dhjo.2010.05.003

Reichard, A., Stransky, M., Phillips, K., McClain, M., & Drum, C. (2017). Prevalence and reasons for delaying and foregoing necessary care by the presence and type of disability among working-age adults. Disability and Health Journal, 10(1), 39–47. https://doi.org/10.1016/j.dhjo.2016.08.001

Schwartz, A. E., Munsell, E. G. S., Schmidt, E. K., Colón-Semenza, C., Carolan, K., & Gassner, D. L. (2021). Impact of COVID-19 on services for people with disabilities and chronic health conditions. Disability and Health Journal, 14(3), 101090. https://doi.org/10.1016/j.dhjo.2021.101090

Sheppard, M. E., Vitalone-Raccaro, N., Kaari, J. M., & Ajumobi, T. T. (2017). Using a flipped classroom and the perspective of families to teach medical students about children with disabilities and special education. Disability and Health Journal, 10(4), 552–558. https://doi.org/10.1016/j.dhjo.2017.03.012

Siebens, H., Cairns, K., Schalick, W. O., III, Fondulis, D., Corcoran, P., & Bartels, E. (2004). PoWER program: People with disabilities educating residents. American Journal of Physical Medicine & Rehabilitation, 83(3), 203–209. https://doi.org/10.1097/01.phm.0000113407.47657.46

Singer, R. F., Dickman, I., & Rosenfeld, A. (2017). Increasing the physical accessibility of health care facilities. U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, Office of Minority Health. https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/Issue-Brief-Physical-AccessibilityBrief.pdf

Standards for Accessible Medical Diagnostic Equipment, 82 F.R. 2810. (proposed January 9, 2017) (to be codified 36 CFR § 1195). https://www.federalregister.gov/documents/2017/01/09/2016-31186/standards-for-accessible-medical-diagnostic-equipment

Stillman, M. D., Mallow, M., Ankam, N., Ojeda, J., Stephens, M., Heckert, K., & Gustafson, K. (2022). The dearth of disability medical education and a partial solution. Teaching and Learning in Medicine, 1–6. Advance online publication. https://doi.org/10.1080/10401334.2022.2119239

Story, M. F., Schwier, E., & Kailes, J. I. (2009). Perspectives of patients with disabilities on the accessibility of medical equipment: Examination tables, imaging equipment, medical chairs, and weight scales. Disability and Health Journal, 2(4), 169–179.e1. https://doi.org/10.1016/j.dhjo.2009.05.003

Turk, M. A., & Mitra, M. (2022a). Continued need for disability competence in health care. Disability and Health Journal, 15(2), 101310. https://doi.org/10.1016/j.dhjo.2022.101310

Turk, M. A., & Mitra, M. (2022b). Disparities, agendas, and policies: Is disability included? Disability and Health Journal, 15(3), 101355. https://doi.org/10.1016/j.dhjo.2022.101355

Tyler, C., Schramm, S., Karafa, M., Tang, A. S., & Jain, A. (2010). Electronic health record analysis of the primary care of adults with intellectual and other developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 7(3), 204–210. https://doi.org/10.1111/j.1741-1130.2010.00266.x

Tyler, D., Hunter, M., Mulmule, N., & Porter, K. (2021, May 31). COVID-19 intensified home care workforce challenges. Washington, DC: Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. https://aspe.hhs.gov/reports/covid-19-intensifies-home-care-workforce-challenges

VanPuymbrouck, L., Friedman, C., & Feldner, H. (2020). Explicit and implicit disability attitudes of healthcare providers. Rehabilitation Psychology, 65(2), 101–112. https://doi.org/10.1037/rep0000317

Varadaraj, V., Guo, X., Reed, N. S., Smith, K., Boland, M. V., Nanayakkara, A. J., & Swenor, B. K. (2022). Identifying accessibility requests for patients with disabilities through an electronic health record-based questionnaire. JAMA Network Open, 5(4), e226555. https://doi.org/10.1001/jamanetworkopen.2022.6555

Woodard, L. J., Havercamp, S. M., Zwygart, K. K., & Perkins, E. A. (2012). An innovative clerkship module focused on patients with disabilities. Academic Medicine, 87(4), 537–542. https://doi.org/10.1097/ACM.0b013 e318248ed0a

World Health Organization (WHO). (2001). International classification of functioning, disability, and health (ICF). Geneva. https://www.who.int/classifications/international-classification-of-functioning-disability-and-health