Resources and Considerations for Consumers, Designated Representatives & Workers
Updated 3/21/2020: The Governor’s PAUSE Act, which shuts down non-essential businesses, does not apply to CDPA. Fiscal intermediaries and personal assistants are essential healthcare workers. Please share this information with anyone who is worried.
CDPAANYS strongly encourages consumers and designated representatives to discuss or otherwise communicate the following with your personal assistants and informal support networks. The ability to plan ahead is critical in ensuring safety.
Consumers should begin communicating with their PAs now to develop a plan in the event that the consumer and/or one or more PAs become ill with COVID-19.
If you are in immediate danger because a worker has taken ill and/or not shown up, you should immediately call 9-1-1 and remain calm. Do not travel to a hospital, emergency room or clinic without an appointment. Many are not accepting walk-ins and you may be turned away at the door.
Areas to consider when developing a plan for COVID-19:
- Who will provide backup? Begin searching and training potential backup workers.
- If the consumer becomes ill, what steps will be taken to prevent the virus from spreading to PAs? Does the consumer have masks, gloves, alcohol swabs?
- Contact your managed care plan or social services district to request additional hours for increased housekeeping services to ensure adequate cleaning in the home, as recommended by the federal government.
- What happens if only one PA is available to a consumer for an extended period of time? How does this impact overtime, as well as the PA and consumer’s well-being?
- Is there a means for the consumer to hire additional PAs in the event that all of his or her PAs fall ill?
- What is the emergency plan in the event that a PA is ill and cannot come to work?
- What is the emergency plan in the event that the consumer needs urgent assistance while the PA is not working?
- Has the consumer developed a plan with their doctor or medical provider to obtain respiratory devices or other medical equipment if necessary?
- In the event that access in and out of the consumer’s or PA’s city, town, neighborhood, community, or even building is limited or stopped by officials, how will they ensure that their PA can reach them?
- Alternatively, what if the PA is stuck with the consumer and cannot reach their family?
New York State Department of Health COVID-19 Website
Updated at least once daily. Includes updates on number of cases, key policy and emergency guidance for health care providers, and prevention and disease resources for the public.
NMD (Neuro-Muscular Dystrophy) United “COVID-19 (Novel Coronavirus) Plan and Preparation Guide for Adults Living with Neuromuscular Disabilities”
NMD United is a group of individuals living with NeuroMuscular Dystrophy. Two members of the group are CDPAANYS’ own T.K. Small and Kendra Scalia. This group put together an excellent resource for individuals as they seek to prepare for and deal with the Coronavirus. In their words, “The goal of this guide is to provide our readers with fact-based, reliable resources that educate our community on how to reduce and prevent the spread of COVID-19, while also providing practical coping tools and life-management strategies that can be used not just for this specific situation, but for addressing any viral or bacterial infection risk.” The guide includes an entire chapter on managing your personal care.
Center for Disability Rights “Action Steps for Attendant Service Users in Response to Coronavirus Disease (COVID-19)”
This guide, put together by the Center for Disability Rights in Rochester, provides a step by step list of action steps consumers and personal assistants can take to protect themselves against COVID-19 and influenza. It specifically stresses the importance of backup assistance and informal supports in the event a personal assistant falls ill and cannot work, as well as the importance of having enough food and personal supplies in the home to last over periods of time.
Centers for Disease Control (CDC) Resources
CDC Steps to Prevent Illness
There is currently no vaccine to prevent coronavirus disease 2019 (COVID-19). The best way to prevent illness is to avoid being exposed to this virus. If you think you have been exposed and have a fever or cough, call your doctor or medical professional right away and stay home.
The virus is thought to spread mainly from person-to-person.
- Between people who are in close contact with one another (within about 6 feet).
- Through respiratory droplets produced when an infected person coughs or sneezes.
These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs.
CDC Identifies “High Risk” Groups”
Experts remain uncertain about the true figures of infections worldwide, but conclude that the majority of patients will experience mild symptoms. However, older adults and those with chronic lung and heart conditions are at an elevated risk of hospitalization and serious health consequences if they contract the virus. If you or someone you know is high risk, please consider the following:
- Have a plan in place if you or someone in your household becomes ill.
- Avoid cruise ships, restaurants and other crowded areas.
- Have essential supplies, including medications, on hand.
- Be prepared to “shelter in place.”
- Prepare for changes regarding work, school closings and childcare needs.
Link: Get Your Household Ready for COVID-19
Link: People at Risk for Serious Illness from COVID-19
CDC Interim Guidance for Implementing Home Care of People Not Requiring Hospitalization for Coronavirus Disease 2019 (COVID-19) (February 12, 2020)
The CDC has issued guidance for homecare workers and families nationwide to help determine the continued stability of consumers’ supports and help prevent the spread of the virus.
Link to home care worker guidance (English): https://www.cdc.gov/coronavirus/2019-ncov/downloads/guidance-home-care.pdf
Link to preventing spread of COVID-19 (English): https://www.cdc.gov/coronavirus/2019-ncov/hcp/guidance-prevent-spread.html
Practice Social Distancing
Avoid busy public places wherever possible to limit exposure to the COVID-19 virus. Decline invitations to social events like weddings or family reunions. Wherever possible, opt for telehealth appointments instead of going in person to a doctor’s office or clinic. For food and essentials, many restaurants and supermarkets offer pickup or delivery options.
Self-Care at Home
If you feel isolated or lonely, know that millions of other people around the world and in your community feel the same way. Be sure to take a break from the constant stream of news. Keeping informed is important, but so is managing anxiety and stress. If possible, open a window or step outside for some fresh air.