In these times of uncertainty and increasing social isolation among children and adults with disabilities or chronic conditions, ARCH has created "Providing and Receiving Respite Care During COVID-19 Pandemic." It was created in hopes of sharing critical information about providing and using respite safely, but will also bring peace of mind to family caregivers as they consider much needed services. For many, respite may be their only connection to supports and services. The guidelines are designed to assist with careful and thoughtful implementation strategies to provide/receive care as safely as possible during the pandemic.
ARCH is a National Respite Network and Resource Center whose mission is: to assist and promote the development of quality respite and crisis care programs in the United States; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.
The decision to resume respite services is a continuous process that involves thorough assessment, detailed planning, ongoing monitoring and regular reassessment. Individuals must carefully consider all potential risks, benefits and barriers before making an informed decision. It is important to remember that information and guidance related to COVID-19 is evolving. It is important to continually monitor and regularly reassess the safety of providing and receiving care. You may need to resume services in a step-wise or phased approach. And, you should be prepared to stop services if the situation changes. It is important that all individuals feel comfortable with the decision and are kept in close communication regarding any changes.
The guide has been developed to help make decisions. Here is some information from the guide.
WHO SHOULD BE INVOLVED IN THE DECISION MAKING PROCESS?
1.) Who is impacted by the decision?
2.) Who should be informed about the decision?
3.) Consider other family members, friends, and other providers.
WHAT IS THE LOCAL CONTEXT?
1.) Are there any local or national guidelines that need to be considered? (Yes, no or unknown)
2.) Is the number of new COVID cases going up, down, or holding steady in your area? (Yes, no or unknown)
3.) Have there been any recent outbreaks or surges in the number of COVID cases? (Yes, no or unknown)
4.) Have there been any high-risk events in the past two weeks, such as large gatherings in the community that could result in an outbreak or surge in cases of COVID? (Yes, no or unknown)
WHAT ARE THE POSSIBLE RISKS?
1.) What are the possible risks for everyone involved? Consider social, emotional, mental, financial, or spiritual needs.
2.) What would happen if no respite care was provided (job loss, impact on mental health of caregiver, out-of-home placement of care recipient, etc.)?
3.) Has there been any impact on the family caregivers' ability to provide quality care? (Yes, no or unknown)
4.) Does anyone involved have an underlying condition or other risk factors that make them more likely to become seriously ill or hospitalized? (Yes, no or unknown)
5.) Does anyone involved have other high-risk exposures (such as exposure from being or living with an essential worker, recent travel, etc.)? (Yes, no or unknown)
6.) Do you have a plan for what to do if someone gets sick? (Yes, no or unknown)
WHAT ARE THE POSSIBLE BENEFITS?
1.) What are the possible benefits for everyone involved? Consider social, emotional, mental, financial, or spiritual needs.
2.) How would respite care benefit family caregivers?
3.) How would respite care benefit care recipients?
4.) What is the current stress level of family caregivers? (choose a number, 1 through 10; 1 indicates little stress and 10 indicates high stress)
HOW CAN RISKS BE MINIMIZED?
1.) Are there policies and procedures in place related to the recommended steps to prevent the spread of COVID-19, including: screening for symptoms, social distancing, handwashing, PPE, and enhanced cleaning and disinfecting? (Yes, no or unknown)
2.) Can you adapt the time, frequency, environment, or types of activities to minimize risk? (Yes, no or unknown)
3.) Do you have access to PPE (gloves, face coverings)? (Yes, no or unknown)
4.) Do you have access to cleaning and disinfecting supplies? (Yes, no or unknown)
5.) Is social distancing (at least 6 feet apart) possible? (Yes, no or unknown)
6.) Can everyone involved tolerate wearing masks or other PPE? (Yes, no or unknown)
WHAT ARE THE POSSIBLE ALTERNATIVES TO RESPITE CARE?
1.) Does the family caregiver have friends or family members who can provide short breaks? (Yes, no or unknown)
2.) Are there other respite options that would help reduce the risks (virtual respite, outdoor respite, in home respite, etc)? (Yes, no or unknown)
3.) Can family caregivers wait a little longer to receive respite care? If so, how long could family caregivers continue quality care without respite care?
MAKING THE DECISION
1.) Does anyone involved have additional or ongoing concerns you should talk more about? (Yes, no or unknown)
2.) Do the potential benefits outweigh the potential risks? (Yes, no or unknown)
3.) What is the best decision at this time? (Resume care or not resume / continue to assess the situation)
4.) How will you continue to monitor the situation in order to reevaluate your decision regularly?
The project that resulted in this guide was supported in part by U.S. Administration for Community Living and Department of Health and Human Services. For the full family decision guide, visit: archrespite.org. And, be sure to follow the latest in CDC guidance and Executive Orders. These thought provoking questions are also transferable and good questions to answer as you are considering other situations and the safety/risk associated with COVID.
Maureen A. Wendt is president and CEO of The Dale Association, a non-profit organization that provides senior, mental health, in-home care, caregiver support services and enrichment activities for adults. For more information, call 433-1937 or visit www.daleassociation.com .