{Image Description} Smiling white female with shoulder length brown hair wearing glasses and a white top.
Dr. Clarissa Kripke is a clinical professor of family and community medicine and director of the UCSF Office of Developmental Primary Care. WITH chatted with her (virtually of course) to learn about her thoughts and experiences during this challenging time.
The guidelines for preventing the virus—social distancing, hand washing, masks—are straight forward but it can be difficult to get people with or without disabilities to comply with them. What do you think is the best approach to keeping people with disabilities healthy?
To stay healthy, we need to help people with disabilities to follow the public health recommendations. Our community is high risk. We need to be even more cautious to prevent the spread of illness in our community than the general population. To do that, we need to make emergency plans, and help each other. The Office of Developmental Primary Care https://odpc.ucsf.edu and Disability Voices United partnered to develop practical checklists and tools. These tools can assist people with disabilities to develop their infection control plan in their home, and to develop personal support plans. These checklists include advice on how to minimize risk of infection if having personal assistants in your home is essential: http://disabilityvoicesunited.org/cv/webinar-on-coronavirus-emergency-preparedness-planning-for-people-with-disabilities-and-their-families/
How are you treating I/DD patients with COVID-19?
Our opportunity to save the lives doesn’t lie primarily with doctors and the decisions they make. It lies with each of us and the decisions we make. Our focus should be on helping people comply with public health recommendations through practical and financial support.
We know how to prevent COVID-19 infections. The most important thing is to maintain physical distance with people outside of your household with anyone exposed, and with anyone sick. Wear a cloth mask outside your home. Limit visitors to only those who are absolutely essential. Every person who enters your home increases you and your household’s risk. If it is essential that someone enter your home to provide care, minimize where they go, how long they stay, what they touch, and how many people they get near. Wash your hands frequently and disinfect high touch surfaces when they leave and at least daily.
We don’t yet know how to treat or cure COVID-19. That is why it is critically important that we do everything we can to prevent the virus from spreading while we are waiting for a vaccine to be developed. For treatment, the most doctors can do is try to support people while their own immune systems fight the virus. At this time, there is very little that healthcare professionals can do to change the course of illness. While there has been a lot of discussion in the news about rationing ventilators, by the time someone is critically ill enough to need a ventilator, their prognosis is poor with or without it. https://www.npr.org/sections/health-shots/2020/04/02/826105278/ventilators-are-no-panacea-for-critically-ill-covid-19-patients.
Also, now is a good time for an individual to develop their personalized healthcare accommodation letter in case they need to go to the hospital. Tools to assist can be found here:
CommunicationFirst Toolkit: https://communicationfirst.org/covid-19/
Healthcare Passport: https://odpc.ucsf.edu/clinical/tips-for-organizing-visits/health-passport
Tracking Forms: https://odpc.ucsf.edu/clinical/tracking-forms
Personalized Accommodations Report: https://autismandhealth.org/
You are on the front lines of the COVID-19 Pandemic. What are the key issues that healthcare providers are facing when serving people with I/DD during this crisis?
The most important immediate issues for healthcare providers and service providers are:
- Access to protective equipment such as masks, gowns, gloves, and eye protection;
- Developing and implementing protocols that maintain good infection control so that healthcare facilities do not spread virus to clinicians, patients, and supporters; and
- Developing capacity for a surge in need for care.
The next issues we will face are the financial insolvency of hospitals and clinics. Healthcare facilities are not generating income from routine care, managing chronic illness, and elective procedures. Many patients are losing insurance. Healthcare workers are losing productivity when they are falling ill. While there is desperate need for healthcare, many healthcare workers are being furloughed and laid off; research enterprises have halted; and medical education has come to a standstill. We will need a functional healthcare and public health system in order to contain the virus when we eventually relax shelter in place orders.
We will also need to figure out how to manufacture the supplies necessary to safely provide care for non-Covid-19 issues. People’s non-COVID-19 related healthcare needs have been put on hold. People with disabilities need care for their other medical and mental health issues in order to thrive. Those issues need attention, even as we manage the pandemic.
Are caregivers backing away from working with people with disabilities during this crisis?
Nobody is expendable. Nobody can be left behind. We all need help during this crisis. We all need to reach out to others to be of service. People with disabilities must balance the increased risk of infection with COVID-19 with their need for personal assistance and consultation and stable services. Service providers and caregivers must balance the risk of infection against job stability, financial considerations, and their obligations to provide care. When making decisions about what care is essential, and what is non-essential, we must do so with caution and compassion. We need to assess individual circumstances and resources. People can’t provide care if they are sick. Their job is not stable if the people they care for are neglected or do not survive. Job security, good care, and infection control go hand in hand.
We will need to develop quarantine center options for service providers or people with I/DD whose families are unable to provide sick care or who do not have a private space where they can self-isolate and receive care.
I am seeing a lot of courage and care in both the disability community which is doing without many of the supports upon which they depend. I see the community working hard to look out for the interests of families and the direct care workforce. I am also seeing courage and care in the service provider and family communities who are stepping up to provide care and help despite their own health risks, increased responsibilities, and needs. We need each other. I am seeing some creativity and thought about how to provide support while minimizing risk as much as possible.
One potential positive outcome of this crisis is that it is requiring us to do very careful and individualized assessments. One size does not fit all. Circles of support are crucial for everyone. This can lead us to identifying personalized solutions. It also highlights the importance of implementing the Home and Community Based Settings regulations. We can better understand now why everybody needs a room of their own. We need to move away from larger residential facilities and shared bedrooms. Service providers can use this opportunity to figure out how to provide more personalized services to individuals. When this crisis stabilizes, we can’t go back to immediately relying on large group programs for day services. They won’t be safe until we have a vaccine which, optimistically, will take a year or two. Many people with disabilities may find that individualized home and community based day services are a better fit than center-based programs. Opportunities for online education are improving, and that can be a boon for including more people with disabilities in regular and higher education and provide access to the full curriculum. We should think about how to support that.
What message do healthcare providers need to understand right now?
Frailty scales have been developed for elders to estimate the likelihood that patients will benefit from aggressive medical interventions. Functional status is used as a proxy for life expectancy. Our vital organs such as our lungs, heart and kidneys have a lot of reserve capacity. I could take out a whole lobe of the lung or kidney or a heart could function at half its capacity, and a person could still function well. By the time someone is experiencing functional limitations due to age or chronic disease in one or more vital organs, their prognosis is poor because their vital organs have very little capacity left. However, many people with disabilities have healthy vital organs, even if they have many cognitive or functional problems. People whose vital organs are relatively healthy benefit greatly from medical interventions, even if they have disabilities. If hospitals are overwhelmed, no judgements should be made about prognosis or likelihood of survival based on their functional status.
Resources for working with hospital teams can be found here: https://odpc.ucsf.edu/clinical/patient-centered-care. Also, no judgements should be made about people’s quality of life. https://odpc.ucsf.edu/clinical/patient-centered-care/who-defines-my-quality-of-life-perspectives-from-disability-advocates
What are some of the policy needs of the disability community?
Dependent adults were cut out of the stimulus package. This puts even more pressure on overwhelmed family caregivers. If the unpaid caregiver workforce collapses, people with disabilities will be at severe risk.
The digital divide is also a life or death issue right now. Not having a computer and high-speed internet means not having access to healthcare, education, or social outlets. People with communication disabilities need access to the equipment that works best for them. Insurance should not limit them to devices that only provide voice output. Devices that provide other functionality such as email or video-enable better participation.
Service providers need support to change their service models to more individualized care models and shift away from facilities with shared bedrooms.
Thank you Dr. Kripke!