PATIENT PERSPECTIVE Caring for the disabled

For people with disabilities, pandemic-related isolation can be terrifying and tragic. The stress can exacerbate mental illness and other health problems, some of them life threatening. Add the loss of mobility and independence, the disruption of routines, the day program that doesn’t open, the beloved caregiver who doesn’t come, and the lack of support that leaves some families no choice but to institutionalize their loved ones, and you have a sense of what many in the disability community are going through every day due to COVID-19.

People with disabilities have been living in isolation for decades, but now their isolation is compounded—particularly for those in congregate living, since many facilities have enacted rules limiting visitation. It’s easy to feel totally alone and without family support because so many people stay close to home, avoid gatherings, and are unable to visit loved ones in a closed facility. The shortage of personal care attendants adds to this issue.

Lapses in routine care can turn into crises when people with disabilities go to hospitals, where exposure to COVID-19 is a real danger. When a person with a disability becomes critically ill with the virus, is that person

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A heightened awareness of these issues and a few simple tips could help physicians provide more effective care for patients with disabilities.

Several states—among them Alabama and Washington—have seen lawsuits alleging rationing and improper levels of critical medical care being delivered to the developmentally disabled population. In response, states agreed to review and update their medical standards of care to address rationing and discrimination against people based on disability, age, or perceived low quality of life.

Excluding certain people with disabilities from access to life-saving treatment such as ventilators based on their disabilities and deprioritizing others based on their disabilities is not the solution to saving supplies or the rationale for choosing who receives critical care during this pandemic. States must also continue to comply with the 1999 U.S. Supreme Court ruling in Olmstead v. L.C., which stated that people with disabilities have a right to access to services in the community of their choice. The medical community must avoid moving people with disabilities into institutional care just to ensure that they are safe. The question is whether or not their safety justifies their segregation. Congregate settings often are not the best solution because of limited support and resources for disabled individuals— as well as heightened risk of exposure to the coronavirus.

It is very common for people with physical disabilities to have mental health issues as well. For these individuals, isolation can compound symptoms due to stress and anxiety. Individuals with mental illness may not want to go to a clinic for a variety of reasons, including fear of exposure to the virus. A physical disability could also be the reason stopping them from getting to a clinic with limited access if they start to show signs of the virus. The negative stigma of mental illness is as much of a barrier as stairs in front of a clinic door.

Individuals with mental illness may also distrust the medical community due to previous traumatic experiences in and out of hospital settings. Because of this distress, they put off seeking treatment even if they have symptoms. If they contract COVID-19 and recover, they fear having a chronic respiratory condition.

According to an article in the June 2020 issue of Disability and Health Journal, COVID 19 appears to pose a greater risk of severe outcomes, including death, for those with intellectual and developmental disabilities (IDD), especially those living in a congregate residential setting. More common disabilities, such as cerebral palsy and Down syndrome, also are in this category, with patients who are more likely to have pre-existing conditions.

People with disabilities are used to the uncertainty of medical care. For example, they’re used to having to try things out first to see if tools,

treatment, or equipment intended to comply with the Americans with Clinicians are faced with a new quandary if patients with disabilities who are Disabilities Act are truly accessible. unable to wear a mask request these exemptions. Physicians have no obligation Staying at home to provide a mask exemption to patients, if it is not medically warranted. They do, however, have a clear obligation to address individual patient’s concerns, We need to ensure that people get support to stay in their communities and don’t discuss appropriate alternatives, and offer clear get transferred to nursing homes. For many people recommendations for risk-reducing measures when with disabilities and the elderly, personal care assistants patients are venturing into public places. (PCAs) allow them to live and work independently. Such care is also available in congregate settings, but Wearing face masks presents a serious often with limited support and resources. Living in COVID-19 appears to challenge for members of the deaf community, the community of one’s choice is the preferred option pose a greater risk ... for who may count on people speaking louder for people with disabilities. those with intellectual and developmental disabilities. or being able to read lips. I have found it very difficult to hear and understand people

Patients on medical assistance who are living talking with their masks on. Masks compound independently may also consider person-centered these challenges to effective communication, assistive technology through organizations such as particularly under the current six-foot social Live Life Therapy Solutions. distancing guidelines. Talking to patients Some simple tips for doctors: slow down your speech, increase the National public health and infectious disease experts recommend wearing volume of your voice slightly, and say the person’s name when you enter a a face mask in public places such grocery stores and pharmacies, where it room, so they know you are addressing them. is hard to stay six feet apart from other people, and many businesses and government agencies may require visitors to wear masks. Gov. Tim Waltz’ Telemedicine Executive Order 29-81 went further, requiring Minnesotans to wear face Many clinics now offer expanded virtual medical visits, which can be a coverings in certain settings to prevent the spread of COVID 19, but good alternative for people with disabilities. However, there is concern allowed an exemption for people with a medical condition, disability, or mental health issue that makes it unreasonable to wear a face covering. Caring for the disabled to page 284

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3 Caring for the disabled from page 27

that telemedicine will not meet the needs of all people with disabilities. Sometimes the provider needs to see an individual in person to truly find out what is going on. The deaf community also struggles with the technological connectivity of virtual visits. Broad band for virtual visits has its challenges in the rural areas as well.

Still, people with disabilities seek a level playing field, and online medical appointments have advantages. The patient may not look as disabled during a telemedicine encounter. There’s no preconceived notion that comes with seeing somebody walk in using a cane or wheelchair. I know from personal experience that when I went from using a cane to using a mobility device, perceptions changed about what I was capable of doing.

Physicians cannot address all of these limitations of telemedicine, but they should be aware of them. One important recommendation for providers is to offer accessible documents, such as large print, audio, and accessible PDF versions of forms and important information prior to the session. Having accessible health care documents on hand helps both medical staff and the patient with a disability, especially when people can’t bring relatives or friends with them into the clinic or hospital during the pandemic. Clinics must allow PCAs and/or guardians to accompany the person with a disability.

To illustrate this difficulty, imagine that your health care provider needs a signature acknowledging that you understand a document. You ask to see it, but they tell you it’s only available in a language you don’t read. However, they’re happy to help! They briefly and cheerfully describe what their document entails. Unfortunately, you still don’t get the opportunity to read it yourself. You just have to take them at their word. Would you feel comfortable signing the document saying that you understand the agreement?

There’s no denying that offering accessible health care documents is the right thing to do. But, beyond that, physicians must be able to show that they are able to “walk the walk” and prove that their organization truly cares about its patients with disabilities. Having alternative formats will also help you avoid accessibility-related lawsuits.

We need to find a way to live in a COVID-19 world and bring individuals, family, and friends together without creating unnecessary danger for those individuals who have not agreed to the risk or should not be subjected to risk.

Joan Willshire, MPA, is CEO of Willshire Consulting LLC. Her focus is on disability inclusion and equity. Previously, Joan was the executive director at the Minnesota Council on Disability for 16 years. Throughout her career, Joan has been active within the disability community and has served on several boards, including the Minneapolis Advisory Committee on People with Disabilities and Accessibility Inc. She was recently appointed to the University of Minnesota Centers for Transportation Studies and Research Executive Committee.

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3 Bioprinting 3D heart pumps from page 25

The primary benefit of a chambered tissue like the hChaMP is that it can replicate the pump function of the heart, allowing future researchers to trace and track what is happening at the cellular and molecular levels, introduce disease and damage to the model, and study the effects of medications and other therapeutics.

To determine pressure volume dynamics as a clinically relevant comparator for this new model system, a conductance catheter harboring a pressure transducer was inserted into one chamber of the hChaMP. The coupling of the pressure transducer with the conductance catheter enabled us to plot both pressure and volume simultaneously as a function of time, which was done for spontaneously contracting and isoproterenol-treated hChaMPs. Pressure-volume vs. time plots were used to generate pressurevolume loops, and from these stroke work could be determined despite the fact that there are no valves to resist emptying and filling. Using the pressurevolume setup, we were able to detect changes in beat rate corresponding to multiple concentrations of isoproterenol. The usual volume moved through the chambers was 0.5 mL and maximum volume moved through the chambers was 5.0 mL, which is approximately 25% that of the average stroke volume of an adult murine heart. Based on these values, we calculated an ejection fraction of 0.7% on average, with a maximum value of 6.5%.

This advance represents a critical step toward generating macroscale tissues, akin to aggregate-based organoids, but with the critical advantage of harboring geometric structures essential to the pump function of cardiac muscle. The utility of this technology for the field of cardiology is access to a human model system that can sustain flow profiles and exhibit pressure-volume dynamics characteristic of the native heart. This model will therefore be useful for understanding remodeling associated with cardiac disease progression imposed by mechanical insult or genetic predisposition. It will also be useful for testing drug toxicity or efficacy and, given the scale, is amenable to the testing of medical devices, implantation to the heterotopic position in mice, and perhaps, one day, clinical transplantation.

Molly Kupfer, PhD, completed her doctorate in biomedical engineering at the University of Minnesota under the mentorship of Brenda Ogle, PhD. She has utilized human stem cells and 3D printing to generate living, contractile cardiac tissue for therapeutic use and in vitro modeling.

Brenda Ogle, PhD, is professor and head of biomedical engineering, professor of pediatrics, and director of the Stem Cell Institute at the University of Minnesota. Her research team investigates the impact of extracellular matrix proteins on stem cell behavior, especially in the context of the cardiovascular system.

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Physician/employer direct contracting

Exploring new potential

With the continuing escalation of health care costs, large and midsized selfinsured employers are once again looking for an edge to manage their medical plan costs and their bottom line. They understand that they are ultimately funding health care as they pay for their population’s claims.

Many of these employers have employed the same overarching set of strategies: shop for a new carrier that is willing to lower the administrative costs or underprice the risk,

Physician/employer direct contracting to page 124 CAR T-cell therapy Modifying cells to fight cancer

University of Minnesota Health is now among the few selected centers in the nation to offer two new immunotherapy drugs for the treatment of diffuse large B-cell lymphoma. Both drugs—Yescarta and Kymriah—are part of an emerging class of treatments, called CAR T-cell therapies, that harness the power of a patient’s own immune system to eliminate cancer cells.

CAR T-cell therapy involves drawing blood from patients and separating out the T cells. Using a disarmed virus, the patient’s own T cells are genetically engineered to produce chimeric antigen receptors, or CARs, that allow them to recognize and attach to a specific protein, or antigen, on tumor cells. This process takes place in a laboratory and takes about 14 days. After receiving the modification, the engineered CAR-T cells are infused into the patient, where they recognize and attack cancer cells. Kymriah received initial FDA approval in 2017 for the treatment of pediatric acute lymphoblastic leukemia.

CAR T-cell therapy to page 144

Advertising in Minnesota Physician is, by far, the most cost-effective method of getting your message in front of the over 17,000 doctors licensed to practice in Minnesota. Among the many ways we can help your practice: • Share new diagnostic and therapeutic advances • Develop and enhance referral networks • Recruit a new physician associate Advertise! IN MINNESOTA PHYSICIAN

3 A telemedicine check-up from page 23

those who are unfamiliar with telemedicine technology—which often J.D. Power study noted that while 9.6% of Americans have used telehealth includes downloading some sort of application onto an electronic device. services, nearly three-fourths (74.3%) say they either don’t have access or Melvin Ashford, MD, of Minnesota Women’s are unaware of a telehealth option. In addition, Care P.A., reports that “Elderly patients do have patients aged 65 and older were less likely to use issues with the technology. Thankfully as of now telemedicine—maintaining the lowest utilization they allow non-video options. For elderly patients rate of any age group surveyed (5.3%). we simply use a phone call. Telehealth will be helpful in extending expert help to other surgeons during surgery but can never replace procedures.” For minority patient populations, there is a larger gap in access to telemedicine technology. Lawmakers and stakeholders in telemedicine are already discussing what comes next. Will the relaxed regulations stay? Should a national

There are additional barriers for low-income telemedicine law be passed? How do we learn patients and minority patients whose preferred from the benefits and drawbacks of telemedicine language is not English. Robert Larbi-Odam, MD, to navigate a post-COVID world? As Dr. Ashford of Community Care Clinics, reports that there is notes, “Medicine was already becoming national an additional cultural barrier with performing any and regional with patients traveling across state in-person visits and using telemedicine with certain minority populations. For lines to visit with providers offering services not available in their area. This minority patient populations, there is a larger gap in access to telemedicine [telemedicine offering] will increase dramatically with enhanced options technology and larger misconceptions about COVID facts, reporting, and and patient acceptance. This also will have a positive impact on the health treatments. Ayan Abukar, CEO of Actioncare Community Clinic, echoes of homebound elderly patients and other populations with limited access this sentiment, stating that the Somali-American population, especially older to care.” patients, prefer in-person visits, which is hindered by any widespread adoption of telemedicine at her clinic. David Holt, JD, is a Minnesota health care attorney practicing at Holt Summary Law LLC. The COVID-19 pandemic introduced many Americans to telemedicine for the first time, so more data continues to be gathered at a rapid pace. The

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3 Designing inpatient adolescent health from page 21

“Familiarity of Home” creates comfortable spaces that are more In addition to the behavioral health projects currently taking shape in welcoming for people in stressful situations and offer a residential feel that Minnesota, we are making progress in the ability to offer appropriate works to de-stigmatize the type of space. environments where dignified care is provided.

“Personal Safety” evokes a sense of safety to ease Mental health care of children and adolescents is the anxiety of both clients and staff. The space driven by the goal to treat the underlying issue, includes a creative use of materials that enhance not just address the symptoms, under a treatment safety and offer sightlines to prevent personal harm. We need to continue to approach that is proactive, not passive. Favorable

“Person-Centric” creates a space that is focused invest in the health and outcomes will continue as we are able to expand on a person’s holistic experience as they come into the facility—not only the way we design the space, well-being of people facing mental health challenges. patient coverage, care services, and treatment regimens. Considerable time, research, and expertise but the way the caregivers work in the space to go into the development of mental health facilities ensure their focus is centered on the client. with a primary goal to provide individualized care

“Grounded Natural Elements” that are safe, and secure for both patients and staff. As a strategically designed to pull in natural light through windows by putting society we need to continue to invest in the health and well-being of people client rooms in the center of the space, incorporating nature and art with soft facing mental health challenges. We have come a long way but are continually organic forms in the architecture that resemble natural elements throughout. learning the best methods for creating better care environments.

“Sensory Awareness” creates an environment that is sensitive to noise and overstimulation by incorporating dimmable lights and movable furniture with Mark L. Hansen, AIA, NCARB, LEED AP, is a Principal and Project thoughtful textiles. The public “Living Room” includes a bubble wall design Manager/Architect with Mohagen Hansen Architecture | Interiors. feature. The bubbles create an organic shape and provide a soothing distraction.

The Triage Center opened to clients in September 2020. As a new archetype we are excited to see how it positively impacts the health of the community. plans in a home-like environment that is flexible, Dave Moga, AIA, NCARB, EDAC, LEED AP, is an Architect/Project Manager for Mohagen Hansen Architecture | Interiors.

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3 Recalibrating Medicare reimbursement from page 11 The gist • Contacting members of Congress by email or phone to alert them many specialty providers, at a time when the financial stability of the health to the devastation of these cuts, as there are many other issues now care system has been the most at risk, increased advocacy efforts are greatly consuming the attention of Congress; and needed to compel CMS or Congress to take action. The latest move by CMS • Providing both home and facility/ puts patients and providers in jeopardy, not just by office addresses as well as the number the cuts to direct Medicare rates, but how these will of employees in the practice, along with reverberate throughout the provider’s payer mix. If any other economic impact information we are to be successful in our campaign to mitigate available. At this unprecedented time, these proposed reimbursement cuts, a broad and every job is significant to a responsive member of Congress. Engaging elected officials and/or their staff Some medical specialists are set to see their Medicare payments slashed by as much 11%. loud outcry and direct engagement will be needed by health care professionals so that policymakers across the country become aware of the issue and doesn’t have to be complicated. It requires its long-term, negative consequences. preparation (e.g., talking points), a respectful attitude that refrains from partisanship, and Kit Crancer is vice president of public policy and an effort to put the cuts into context based on executive director of the CDI Quality Institute. an issue they may be passionate about, such as job loss or patient access. Because of security reasons, an email or phone call is likely most efficient, which requires that the request (“waive Zachary Brunnert is director of state legislative policy at the Center for budget neutrality”) to jump out in the subject line or be explained Diagnostic Imaging. almost immediately.

One resource, which the authors and others involved in health policy have been involved in developing, is the website DontCutDocs.com. We’d invite anyone interested in getting involved to make this site their first stop. As CMS appears unlikely to unilaterally walk back large-scale reductions to

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In a pandemic, speed and access to information and resources are vital. Knowledge saves time, and you need all the time you can get to save lives. Introducing the COVID-19 Resource Center. Right here, right now, for you. On our website, you’ll find the latest information and resources for important topics like: • Telemedicine: including best practices and plain language consent forms • Links to infectious disease prevention guidance • Education and resources for healthcare providers on the front lines You can access Coverys’ industry-leading Risk Management & Patient Safety services, videos, and staff training at coverys.com. All in one place, for our policyholders as well as for all healthcare providers. Thank you. For all that you are doing. You are our heroes, and we are here if you need us.

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