Guidance for Healthcare Providers / Systems

The hope of the Center for Disability Health and Wellness and associated departments is to enhance our ability to care for patients with disabilities in a thoughtful, evidence-based and ethical manner. We have developed a task force to develop COVID-19 guidelines and recommendations for both patients and providers.

Our team plans to continue to review, update and expand our recommendation and guidelines. As able, we will develop specific guidelines for patients with different types of disability as well as summarizing recommendations for clinicians working with patients with disabilities.

Members of our task force include:
Mr. Ted Allaire, PMR
Dr. Edmund Chadd, PMR
Dr. Joshua Ehrlich, Ophthalmology
Dr. Steve Erickson, Pharmacy
Dr. Susan Ernst, OB/GYN
Mr. Donn Hilker, Rehab Engineering
Dr. Michael McKee, Family Medicine
Dr. Michelle Meade, RPN/ PMR
Dr. Carrie Pilarski, RPN / PMR

Rationing of Care

The ongoing COVID-19 health crisis is stressful for everyone; however, the stress placed on the disability community has been particularly acute. One particularly salient concern expressed by this community is fear of being viewed as expendable or as undeserving of equal healthcare access by healthcare providers

In addressing this concern, it is important to note that people with disabilities are afforded certain legal protections under the law. The U.S. Department of Health and Human Services (HHS) has recently reiterated these legal protections. Michigan Medicine fully abides by these laws and would like to emphasize that: (1) individuals with disabilities will not be denied care or equipment because of disability status or perceptions about their quality of life and (2) that existing equipment and care will not be taken away from individuals with disabilities in order to re-allocate them to others.  This would include, but not be limited to, home ventilators, masks and gloves.

Statements reiterating Michigan Medicine’s commitment to using ethical and evidence-based approaches for providing services to individuals with disabilities should be clearly stated to address the concerns of many of our patients and the disability community as a whole.  We need to be transparent about the approaches that are decision making paradigms and how accommodations for individuals with disabilities should be asked for and addressed.

If decisions will be made based on age and survivability, this should not unfairly target patients with disabilities. Health care providers should avoid making assumptions on the quality of life or long term survivability simply based on a documented disability or diagnosis. This should be determined on an individual case by case basis on whether an individual with a disability has a poor prognosis due to a Covid-19 infection. Disability based diagnosis can vary widely on their severity and their ability to manage their health needs. Unconscious bias is common among health care providers and staff and may influence how they judge the value and quality of life of individuals with disabilities. Health care providers should take into account what data and information is used to determine their decision for possible medical care rationing.

Hospitalization of Adults with Disabilities

• For individuals with developmental and cognitive challenges, it will be critical to involve family members and caregivers, as well the adults with the disabilities themselves, in the management of and involvement in the management of COVID-19 (including during hospitalization). Specific accommodations which should be allowed include:
• Allow a family member or caregiver to accompany the patient; that individual would need to be informed of the risk and provided with appropriate protections.
• Develop a plan to facilitate virtual visits / communication with family members and caregivers while in the hospital
• The Michigan Developmental Disabilities Institute (DDI) has compiled a list of resources that might be useful for adults with developmental disabilities and those involved in supporting and caring for these individuals.
• For all individuals with disabilities, it will likely be helpful for healthcare providers to do the following:
• Ask them to bring in specific guidelines of protocols for their health management, to include both health behaviors (rolling, cathing, etc) and medications;
• Alternatively, be prepared to conduct intake assessments including this information
• Recognize the relevant expertise of patients about their own health management and engage them in the plan to integrate these into ongoing care
• Encourage them to bring in needed supplies
• Identify areas of risk for future problems or infection
• For example, if individuals have a history of pressure sores and flap surgery on a particular area, it will be important to consider this when planning to prevent skin breakdown (e.g., avoiding rolling to particular sides, further protecting the area)
• Outline preferred methods of communication to ensure good level of communication accessibility. It is important to recognize that former accommodations (e.g. in person interpreter) may no longer be available or feasible. Back up options to achieve effective communication should also be highlighted.

Sanitation and Hygiene

Public health authorities have strongly emphasized the importance of handwashing and other general hygiene practices in reducing risk of contracting COVID-19. For people with disabilities, these guidelines expand to other aspects of sanitation and cleanliness. For example, Peter Axelson, a rehabilitation engineer, has compiled guidelines regarding wheelchair cleanliness and how these practices may further reduce individuals’ risk of contracting COVID-19.

Communication

As needed and appropriate, healthcare providers should make use of non-verbal methods of communication to maximize patient involvement in decision making regarding their own care. This may include examples such as the use of video remote interpreting with HIPAA compliant tablets or personal computers to provide language translation, clear face masks to aid with lipreading or brief note writing to assist for quick notifications. For example, there exist publicly available resources to facilitate non-verbal conversations regarding medical decision making. This resource also includes a number of other tools useful in facilitating non-verbal communication within a variety of healthcare settings, as does this other resource provided by the National Association for the Deaf. Keep in mind that your voice may be muffled with the use of surgical masks or other forms of personal protective equipment. You may want to speak slower and a bit louder to help with this.

Additional Information

Guidance to State Hospitals. APPLYING HHS’S GUIDANCE FOR STATES AND HEALTH CARE PROVIDERS ON AVOIDING DISABILITY-BASED DISCRIMINATION IN TREATMENT RATIONING. https://www.centerforpublicrep.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf