Zary Amirhosseini, MEd, gerente del programa de discapacidades de Massachusetts General Hospital, analiza el impacto de la pandemia en las personas con discapacidades, así como los consejos para que tanto los individuos como los cuidadores se mantengan seguros.
- The COVID-19 pandemic has disproportionately impacted people living with disabilities
- Health care providers should be knowledgeable about resources and tools available to ensure full access for their patients with disabilities
- Individuals with disabilities and caregivers should take extra steps to ensure their health and safety
- Individuals with disabilities should document their disability and/or accommodation needs either by updating their information through registration or their health care providers
People living with disabilities have been disproportionately impacted by the COVID-19 pandemic. As this particularly vulnerable segment of the population encompasses a variety of conditions and impairments, those with disabilities have faced many barriers throughout the pandemic. For example, they may be at a potentially higher risk of contracting the virus due to underlying conditions, have difficulty engaging in preventative measures or experience disruptions to health services they normally rely on.
As the pandemic progresses, it is critical for both individuals living with disabilities, and those who are their caretakers, to take the necessary steps to protect their health and well-being. Below, Zary Amirhosseini, MEd, disability program manager at Massachusetts General Hospital, discusses the impact of the pandemic on people with disabilities as well as tips for both individuals and caregivers to stay safe.
The Unique Challenges During COVID-19 for People With Disabilities
Throughout the pandemic, daily life and access to health care has worsened for people with disabilities.
"We all have heard the news about the higher death rate for those with developmental disorders and intellectual disabilities, veterans and aging populations who live in group homes or nursing homes," says Amirhosseini.
Some of the unique challenges that many individuals with disabilities are facing in the midst of COVID-19 include:
- Inability to wear masks due to health risks: Some individuals may not be able to wear a standard surgical or procedural mask due to a disability or medical condition. Examples of risky circumstances include when the face mask affects a person’s ability to breathe; exacerbates symptoms related to post-traumatic stress disorder; causes sensory overload, feelings of panic or extreme anxiety; and presents a communication barrier by impeding lip reading. No one is required to wear a face mask or covering in a situation that creates a health risk or is not safe
- Having to abide by health care visitor policies that exclude support persons: Across the United States at the beginning of the pandemic, there was inconsistency in implementing policies which allowed support persons to accompany patients with disabilities. As a result, many have been denied care or may have experienced adverse impacts of not having their support person with them
- Inaccessibility through telehealth tools: For those who are blind or visually impaired, telehealth tools may not be compatible with certain programs such as screen readers; for those with cognitive delays, the tools may be difficult to navigate; for those who are deaf or hard of hearing, accessing information through American Sign Language (ASL) interpreters and/or captioning may be unavailable if not arranged in advance
- Negative consequences resulting from social distancing: While the golden rule during the pandemic has been to limit interaction with others as much as possible, this can be difficult for those who need extra assistance or require a caregiver; for those with physical and sensory disabilities seeking accommodation and for those with mental health conditions struggling in isolation
- Lack of access to COVID-19 testing and testing sites: Particularly for those who are housebound and/or unable to travel independently, acquiring safe transportation to and from a testing site may be near impossible
Keep Pandemic Protocol Top of Mind
In order for people living with disabilities to mitigate health risks, following pandemic protocol is critical. Mobility aids such as walkers and wheelchairs and any other type of assistant devices should be disinfected regularly—particularly when used outside the home. Additionally, clean high-touch surfaces, phones and other appliances, and make hand-washing a priority. Individuals with disabilities should also ask caregivers to wash their hands or use hand sanitizer prior to touching or providing assistance.
Hiring qualified personal care attendants to assist with activities of daily living may be more challenging during COVID-19. As such, it is important to have a backup plan in place. Identify a support system by creating a contact list of friends/family, local community agencies and health care providers who can provide support in case the individual or their support person becomes ill.
Accommodation Requests in Health Care Settings
People living with disabilities may experience health issues specific to their disability that need to be managed differently during the pandemic.
"They should communicate these concerns with their provider as soon as possible," says Amirhosseini. She advises all patients with disabilities or their appointed support persons to communicate their accommodation needs with all members of their care team.
For individuals who are deaf or hard of hearing, neurodiverse or on the Autism Spectrum and more, it may be challenging to communicate with health care providers wearing masks. In health care settings, these individuals can request:
- For staff to wear clear window masks, so they are able to read lips and see facial gestures
- The support of ASL interpreters or Communication Access Realtime Translation
- To use hearing enhancers
- Access to bedside tablets for enhanced communication with health care providers, as well as family members who may not be present during treatment
- To use alternate masks if they are unable to tolerate regular hospital masks
Other communication needs may include:
- Patients who are non-verbal can request the use of visual scales to assess pain and communicate other requests
- Patients who have difficulty with processing information can request to tape record appointments, be accompanied by a support person or to receive a detailed visit summary
Physical Access Needs
Patients with disabilities may request adaptive medical equipment such as adaptive call bells, height-adjustable exam tables and accessible wheelchair scales. In addition, they may also request assistance with completing forms, transfers and navigating the facility.
Patients who are blind, low vision or visually impaired may request printed material in Braille, large font or electronically.
Patients who are deaf, late deafened or hard of hearing may request procedural or health-related educational videos to be captioned.
Patients who are neurodiverse or on the autism spectrum may need calming and/or private space to minimize noise and visual overstimulation.
Support Persons and/or Service Animals
Patients with disabilities may need to bring their support person and or service animal to their hospital appointments and admissions. Patient should notify the hospital prior to appointments and admissions.
Appointments and Scheduling
Patients with disabilities may need to schedule appointments at specified times to accommodate transportation and availability of a support person. In addition, patients may need to schedule first or last appointments on the same day in order to reduce wait time.
Accessibility of the Virtual Environment
During COVID-19, most appointments, scheduling and communication may need to happen virtually. Patients with disabilities may need to access telehealth, Patient Gateway and other appropriate websites.
Amirhosseini recommends that patients and caregivers familiarize themselves with telehealth and identify any issues or barriers prior to the date of the appointment. Examples of requests patients can make include:
- Real-time ASL or captioning during appointments
- That virtual text be in a format that is compatible with screen readers
- For a support person or ASL interpreter to be present during their telehealth visit
Building Better Systems to Support People with Disabilities
To empower individuals with disabilities, and to ensure their optimal health and well-being, many aspects of society must become more accessible and inclusive.
"Since March, we have worked with our colleagues across Mass General Brigham to ensure our patients with disabilities continue to receive the care they need," says Amirhosseini. "We have done this by looking at the issues identified as barriers and addressing them through the development of policies, guidelines and a repository of COVID-19 resources for both patients and providers." In order to fully guarantee access for all, Amirhosseini says next steps are necessary. Health care leaders must:
- Adopt an inclusive, human-centered design: This involves approaching a problem with the people the solution is intended for in mind and creating new solutions that are tailor-made to suit their needs
- Collect disability data: In order to measure and manage outcomes, people with disabilities must be included in studies, clinical trials and data collection
- Develop training programs for health care professionals: These programs must be aligned with the specific care needs and rights of persons with disabilities. Programs should also address societal stigma that creates additional barriers for people with mental health issues and psychosocial disabilities
"All these actions directly state a commitment to not only acknowledging, but also celebrating diversity," says Amirhosseini. "We need to consider many different types of abilities as well as increase accessibility."
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