As the entire country watches in shock while residents in nursing facilities and other institutions are dying in large numbers, the general public is now recognizing the dangers that we have always know are inherent in congregate living. It is clear that something will need to change, and that people should no longer be forced into institutions where they are far more likely to die.
But first, we need to take action right away to save people’s lives.
Earlier this month, the Center for Disability Rights and Rochester ADAPT sent a proposal to our county to work with us on expediting the transition of folks out of nursing facilities and into the community in response to COVID-19. (See below.) Although it won't solve the entire problem of COVID-19 in local nursing facilities, the project will give at least some people an alternative where they can leave the facility and socially distance.
Today, we had a follow up call organized by the Deputy County Executive who oversees social services and Medicaid. That call also included the CEO of the primary aging services organization locally, the Chief Medical Officer from the area’s health systems agency and the head of our County Office of Emergency Management.
We are excited to report that the county and this team are on board! The team is bringing in the county’s Medicaid staff who authorize community-based Medicaid and Medicaid services. We have started reaching out to the individuals who we are already working with in Monroe County through the Open Doors Project to ask if they are interested in an expedited transition.
This project leverages some resources that are specific to our state and locality. Everyone is not in the same situation and won’t have the same resources, but this project represents one way that Independent Living Services are meeting the immediate needs of people with disabilities during the COVID-19 pandemic. I hope that that by sharing this, if they aren’t already doing it, other folks may develop their own approach to meeting the needs of folks in their local institutions.
I want to make sure that I acknowledge the leadership of folks in Colorado. This project was built on their great idea and the work they are doing. I am also very proud of the leadership from our local County officials and my hard-working team who are bringing freedom and safety to people with disabilities in Monroe County during this pandemic.
We will keep folks updated on our progress.
Proposal to address the COVID-19 pandemic in Monroe County Nursing Facilities
April 15, 2020
If our nursing facilities were on fire, the very first thing we would do is GET PEOPLE OUT! Unlike other emergencies, instead of helping these individuals escape to safety, that isn’t happening and the deaths pile up. So far, in New York, we are told that Coronavirus has killed more than 2,700 people in the state’s nursing facilities. That means 11% of all the US Coronavirus deaths were in New York nursing facilities. It is long past time to act to protect nursing facility residents.
The Center for Disability Rights and Rochester ADAPT are proposing a plan for Monroe County to address this: Use the resources we have at our disposal to get people out of these facilities and allow them to socially distance. Our intent is to establish this for all of the nursing facilities in Monroe County, but at a minimum, we could start immediately with the county nursing facility, Monroe Community Hospital (MCH).
To be given the opportunity to socially distance and survive the pandemic, residents in Monroe County nursing facilities would be transitioned to local hotels where they could stay for at least a two-week period with a CDPAS attendant/caregiver who would self-quarantine with them with the goal that they be given the option to transition into the community either living on their own or with family.
Upon identification by the nursing facility, through self-identification by the individuals or a family member or by referral from the active Money Follows the Person active transition list, the individual is referred to this project.
The Center for Disability Rights (CDR) CDPAS program staff would work with the individual and their family to identify someone who could provide the attendant services and self-quarantine with the individual for 14 days and enroll that caregiver as an attendant in the CDPAS program. CDR would train/support the individual or a designated representative on how to manage these services. They would only need initial basic training as additional training and support could be given over the two-week self-quarantine period.
The Monroe County Department of Social Services (MCDSS) would transition the individual to community Medicaid and immediately authorize live-in CDPAS services for the individual for at least the two-week period, unless the nursing facility indicates that the individual requires a more intense level of care which would result in authorization of additional services. Where needed, MCDSS would also immediately authorize other equipment needed by the individual for a successful transition. In instances where the individual’s services are authorized by managed long term care organizations, MCDSS will notify the managed care organization that they need to make the authorizations needed to support transition.
The Regional Center for Independent Living (RCIL) accessibility staff would provide loaned adaptive equipment currently available in its loan program to support the transfer and transition of these individuals to their temporary housing.
CDR transition staff would coordinate the actual move with the individual, family members (if applicable), nursing facility staff and hotel. We would use facility or Medicaid transportation to transport the individual to the hotel and CDR/RCIL would use their vans to move equipment and supplies as needed.
The nursing facility would provide a very basic care plan and a three-week supply of medications for the transition. Throughout the self-quarantine period, their staff would serve as a phone-in resource to answer any questions the consumer or their attendant would have.
CDR and RCIL Independent Living staff would also be able to help by providing information, peer support, and independent living skills assistance through remote support.
FEMA funds should be tapped to cover the cost of the hotel stay. We could use FEMA funds for food as well at least until the individual’s community benefits begin. While in self-quarantine, individuals would be given an opportunity to order delivered food. Additionally, CDR staff would identify other resources for delivered meals.
During the two-week self-quarantine period, if the individual or designated representative seems unable to manage the consumer-directed personal assistance services, a licensed home care agency such as All About You Home Care (AAY), will arrange to train the individual providing assistance and facilitate the application and hiring process to bring them on as a PCA. This will allow them, subject to background checks and review, to continue to serve the individual as a PCA on an on-going basis.
During the self-quarantine period, individuals would be given the opportunity to select a managed care company or enroll in the Nursing Home Transition and Diversion waiver for on-going services and supports. Following the two-week self-quarantine or as soon as practical, the individual would be assessed for the specific level of need for personal assistance services and authorized for on-going services.
Bringing This to Scale
As disability-led organizations who have been devoted to the transition of people with disabilities into the community from nursing facilities and other institutions, we bring a personal passion to this project and a unique perspective not found elsewhere in the provider community. Of course, because we had the vision for this, we want to be involved in this effort, but we do not want to exclude other organizations or other bottleneck a project that can save lives. This project should be maximized to serve the greatest number of people, bringing in partners who have expertise and commitment to its end goal.
Credit Where It Is Due
Members of Atlantis ADAPT and the Colorado Cross-Disability Coalition in Denver Colorado were discussing this issue and generated the basic framework for this. We’ve expanded and adapted the model for Monroe County with the potential for implementation across New York State.