What follows are preliminary findings from an ongoing study. If you have particular insights or experiences with these issues and would like to share more, please contact Jennifer Fournier at: fourn045 (at) d.umn.edu.

This project focuses on what medical resources are physically and financially accessible to rural Minnesotans with disabilities, as defined by the Americans with Disabilities Act: “a physical or mental impairment that substantially limits one or more major life activities of an individual, a record of such an impairment, or being regarded as having such an impairment.”

Throughout the United States, disability rates are higher in rural areas compared to urban areas, and that holds true for other countries. In fact, disability rates are actually rising at a steady increase in rural areas, and persons with disability are more likely to stay in a rural area than persons without disabilities. However, while persons with disabilities have a greater predisposition to stay in place, that is to either stay rural or urban, they have lower inclinations to stay rural. In other words, persons with disabilities tend to stay rural even though they would rather not. It is difficult to ascertain if this is from lesser affinity for rural or greater barriers to migration.

This study focused on access to medical resources, including primary care. Past researchers have found that there are seven dimensions of primary health care access: 

• availability: including resources such as staff, buildings, and equipment

• geography: distance and transportation, including climate and terrain 

• affordability: direct and indirect costs (such as transportation) 

• accommodation: operation hours, architectural design (such as wheelchair access) 

• timeliness: wait time to receive care and consequences of longer waits

• acceptability: attitudes of health care providers

• awareness: knowledge of available services, patient diagnoses, ability to communicate

 Other studies have pointed to the dilemma of attracting and retaining qualified health care workers in rural areas. Moreover, those who do work rural are often not trained on treating the complex needs of persons with disabilities and often either provide less than adequate care or “dump” patients to larger, urban hospitals. Poor coordination of care between rural and urban care facilities, as well as the geographic barriers of time and distance, also leads to unsatisfied health needs. While telehealth is a potential satisfactory solution for both patients with disabilities and physicians, it is not available in many remote areas. Moreover, few professional health care training programs address disability issues, such as communication skills with those who are without speech, in their curricula.

When patients were asked in a focus group to discuss the barriers to care, their answers looked slightly different than the aforementioned data. These individuals quoted the shortage of knowledgeable primary care physicians and specialists within geographic distance, lack of available transportation, and health insurance inadequacies as barriers to their own care. These patients often “doctor shop” to find a physician who is knowledgeable about their health concerns or go on “pilgrimages” to get all of their medical procedures done at once. In Minnesota, this is often shown as a rural resident traveling to Rochester for a work-up at the Mayo clinic.

There have not been an abundance of studies pertaining to access to medical resources for rural persons with disabilities. However, the above literature does mention some recommendations for future studies, including quantitative research of barriers to assess the extent of disparity, research on communication in medical education that also explores health care provider perspectives, and research exploring the role of alternative medicines. The lack of information already indicates that this topic is not given enough attention. Indeed, WHO specifically points out that disability is often not perceived as a public health issue, when it is just the opposite.

Aims and Methods

When researching questions such as “What is absent in an area?” one can not easily start with numerical data without first grasping the complexities of the topic itself. It is clear that healthcare workers dealing with this issue on a daily basis would have a strong grasp on what resources are available, effective, or realistic. For example, while a rural hospital website might advertise a specialty, group home workers might know that this specialist is actually only at the hospital one day each month. Healthcare personnel with such knowledge would include those working in the hospital itself, long-term care facilities such as group homes or nursing homes, and short-term aid programs such as homeless shelters. In order to discover these systemic deficiencies, I conducted interviews with three such individuals “on the front lines.” This sample comprised a rural ER physician, a rural hospital social worker, and a director of a rural homeless shelter. Despite the small sample size, which can be attributed to the challenge of finding healthcare workers who were not fatigued and overworked from the COVID-19 pandemic and, correspondingly, who were willing and had time to be interviewed, these three first-hand accounts help illuminate rural absences that can further be measured numerically in future studies. Significantly, they also represent three distinct rural geographies across northeastern Minnesota. In addition to interviews, I also conducted extensive analyses of organizational and institutional websites, policies, regional networks, and interdisciplinary literature relevant to the topic at hand. In what follows, I present emergent and consistent themes from my data, contextualizing key informant quotes with additional reflection and analysis.

Resources in “the Metro”

Hennepin County has a more user-friendly webpage of community resources than Saint Louis County. Neither website clarifies how recently they were updated. The nature of the topic is that resources, including money and programs, are not necessarily scarce. In the MN Metro area, there may be more funding opportunities, grants, etc. however, it is hard to know which programs are still in place and who might qualify. Without interviewing frontline workers in the Twin Cities, it would be difficult to say for sure if their healthcare workers have a more firm grasp on how to navigate such a fluid field.

Resources in Rural Northeastern Minnesota

My interviews with front-line workers allowed me to identify a number of consistent and consequential realities for rural individuals in northeastern Minnesota. These include:

1. Lack of Updated “Master List”

In NE Minnesota, there are numerous programs out there to help disadvantaged people, all coming from different levels of funding and groups of people providing these services. This includes programs such as AEOA, Arrowhead Transit, free clinics like Project Care, and homeless shelters, to name a few. Yet with only a few exceptions, none of these agencies explicitly focus on disability / health supports. In other words, there is an extra hurdle to find the program and/or person who may be helpful within the organization.

Indeed, both funding and public knowledge of these programs is ever-changing and seems to be a large issue. 

...despite working in it, it's very difficult for me to keep on the latest legislative initiatives as it relates to resources available to those with disability. It's state, county specific, and then there's monies from national level too, federal funding that comes in and out. It's very--it's very fluid situation. - ER doctor

There is no “master list” of programs available and the people who seem to know everything, public health nurses and county caseworkers, take many years of experience to gather their knowledge. When they retire, their replacements have to start all over from ground zero. While there is a Saint Louis County website that has a large amount of information, the problem is that the programs are not frequently updated.

[Physicians] will like provide suggestions, and then in reality, like it's not offered here. Or it's not an option in our area. - Social worker

Of course, it’s important to note that physicians, caretakers, and patients themselves have limited time to research programs and funding for each scenario. Even if they did, it would be an inefficient way and of limited relevance.

…[E]ven those of us who are engaged in this work, involved in this, don't have a day-to-day grasp on all the nuances. - ER doctor

Most importantly, the fact that patients cannot afford or access medical resources is an issue itself besides trying to navigate numerous programs for transportation, medication access, affordable physician access, etc. The physicians themselves run across specific scenarios that insurance hasn’t even thought of and they struggle to help rural and underserved patients.

The system is inherently dysfunctional. And it cannot accommodate all of the nuances and special circumstances we run across. - ER doctor

2. Physician Knowledge Gaps

Individuals who are high anxiety and that are homeless are often being told, in the emergency room, that your issue is that you are homeless. - Homeless shelter director

While the lack of primary care physicians and specialists in rural areas has been studied before, the new takeaways from this project highlight the lack of physician knowledge on specific diagnoses and on the effects of homelessness on a person’s health. Patients already struggling to find a primary care physician are “shopping” for a doctor who has experience treating their specific condition. This issue may not be unique to rural communities, but the lack of education on the effects of homelessness on a person’s health in medical curricula leads to inadequate care in the clinic or emergency room. 

But I--it just breaks my heart every time that I see somebody returning from a hospital, from the emergency room, and being told that their diagnosis is homelessness. - Homeless shelter director

3. Lack of Insurance-covered Transportation

One of the foremost issues that emerged in this project was the critical lack of transportation covered by insurance, specifically for instances that do not require an ambulance such as urgent care issues or discharge from the hospital. 

...oftentimes, the transportation companies, it doesn't benefit them to come this far, to only transport for a few miles. So they'll say that they can't, or that, you know, that they won't be able to do that. -social worker, [town, MN]

This leads to a burden on those with families to help out, a lack of urgent or preventative care, or worsening of health conditions until they do become ambulance worthy. This is another barrier for those who need special accommodations, such as those who utilize wheelchairs, or persons who do not have friends or family available during business hours to drive them to appointments. 

4. Inaccessible Primary Care

I’m always telling people, oh you need blood pressure meds? How many do you have? Can you wait until Wednesday, and can you go to Project Care? - Homeless shelter director

It has been well established in literature that there is a shortage of primary care physicians both in rural and non-rural areas. This leads to limited availability to establish a primary care physician (PCP) for those who need it and creates a bigger issue when physicians start turning away noncompliant patients. For example, patients experiencing homelessness often do not have a mailing address, email address, or phone number that they can be reached at for appointment reminders. They also struggle with transportation in the middle of a day to a clinic that is only open 8 am - 5 pm. When patients are “noncompliant” and miss a threshold of appointments, physicians will often ask them to find a different primary care provider. On top of that, when patients do not have a PCP, there is ambiguity of what is and is not a primary care issue to them and often go to the emergency room mistakenly. The ER doctor also attributed this to the fact that the ER has hours compatible with people who have to work during the day or those who depend on rides from those who have daytime jobs. Primary care hours are just not compatible with every population and are a barrier to care.

What is needed to bring these services to a rural area and/or to make them accessible to a wider public?

This research has demonstrated the need for insurance coverage for non-ambulance medical transportation, rural primary care physicians, and physicians with knowledge of social determinants of health, such as homelessness. However, as was mentioned multiple times throughout the interviews, a large part of the problem is lack of awareness of programs and grants available in an area. There is not a website compilation of resources that can easily be updated. The interviewees recommended calling a county caseworker as the best, up to date option for help. It would be easier and more accessible to health care providers and patients alike if there were a website compilation of resources to reference that was frequently updated. In conjunction, coffee shops, beauty salons, and offices could act as alternative sites where people with disabilities can access information and health care services for those lacking primary care. Furthermore, changes to Medicaid and Medicare to cover non-ambulance medical transportation, without requiring 48 hours notice, would make a huge change. Lastly, more health care provider education on the social determinants of health, such as homelessness, would stop the inadequate care that some have experienced in the Emergency Room.

Suggested Reading:

 “Factors affecting access to primary health care services for persons with disabilities in rural areas: a “best-fit” framework synthesis.” Global Health Research Policy 3, no. 36 (2018). https://doi.org/10.1186/s41256-018-0091-x

Lee, Knicole. “Lack of Primary Care in Rural Areas for People with Disabilities.” Iris Journal of Nursing and Care 2, no.4 (2020). doi: 10.33552/IJNC.2020.02.000549.