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COVID-19 Roundtable With IDD Leaders: Key Takeaways

Jul 2, 2020

by Rachel Boynton

Volume 7 Issue 12, June 23, 2020

In the middle of May, I had the opportunity to participate in a conference call with leaders in the field of providing support services to individuals affected by intellectual and/or developmental disabilities (IDD) during which we discussed the impact of COVID-19 on our services. This group consisted of direct service providers, area agency/managed care providers, and those who help with consulting and/or planning services. Representatives shared their current perspective of COVID-19 and how their services were affected, how they are planning for the "next phase" of communities opening back up, and the possibility of another lockdown.

Here is a summary of some of the key takeaways from the discussion.

Impact and Response to the Lockdown

The pandemic lockdown restrictions created a difficult situation for many individuals receiving support, specifically those attending day programs, living in congregate settings, and requiring group transportation. Those organizations with a shared living model did not experience the same level of difficulty and disruption since individuals were locked down with home care providers who often provided day program services from home. Some of the smaller group home providers used a roommate model to cover shifts during the lockdown, which helped to minimize rotating staff. At the time of our call, everyone was beginning to feel the effects of the extended stay-at-home orders and were anxious for a return to some semblance of normalcy.

Many of the providers on the call were fortunate to leverage technology to provide services without entering the homes. One participant explained how her agency used online groups, such as cooking classes, yoga, and book clubs, to help provide activities throughout the lockdown. This helped her team continue to deliver a billable service while providing many individuals with meaningful breaks from the monotony of home seclusion. Others also leveraged technology to maintain continuous contact when visits to the home were unsafe. 

Assessing the Current Challenges

As states start to reopen and services phase back in, the challenge of how to respond to the health crisis continues. What is safe, and what is right? Many people, including staff, providers, and those receiving supports, have endured weeks inside. Many are dealing with mental health issues associated with the significant change in routine and limited outside activity.

Since many of us are responsible for the wellbeing of those individuals receiving supports, we are grappling with the balance between personal rights, mental health concerns, and everyone's safety and security. There is also the risk versus reward issue where we must determine what risks are acceptable to help people feel connected and part of a community while keeping them safe. This is a decision we all need to make individually, but the weight is extraordinary when we are trying to calculate risk versus reward for others who depend upon our supports.

Another unexpected stress as we try to normalize day programing is the issue of who will get paid. Many home care and residential providers have enjoyed the extra income and personal safety of providing day programs in isolation. Some are hesitant to encourage a community-based day program because they will be increasing exposure of those they support and the family in the home. They would also lose the income they have benefited from during the pandemic. Meanwhile, day program providers are looking forward to restarting services and revitalizing their business and are working diligently to implement safety protocols.

Finally, many providers are looking for some direction on how to safely resume services. Some providers said they lack trust in the federal government and/or their local governments since guidance has seemed to come slowly and often contradicts recommendations provided by other agencies. Most providers are looking within their communities to determine the best way to minimize risk while allowing for increased freedoms in the community. Several challenges that require care consideration include how to facilitate group transportation and congregate typical day activities, such as cooking classes or working out at the gym, safely and effectively.

Preparing for the Unknown

Most of the leaders on the call agreed that a "second wave" of COVID-19 is likely and they intend to create plans in advance. Two of the providers already developed a screening tool for individuals and staff members to help determine their risk of infection and spread before they are permitted to engage in additional activities outside of the home. Another provider shared her use of an app that is allowing her team to track infection in her area in an effort to help minimize the risk of exposure as well.

The group agreed that emergency planning must be conducted on an individual basis since there is no "one-size-fits-all" solution. As we create these plans, it will be helpful to look at the layers of natural supports available to each person receiving services to find family and/or close friends who can help to maintain as much normalcy and comfort as possible during these times of crisis.

Lessons Learned

It was widely agreed by call participants that they have learned many significant lessons from the pandemic. For some, the value of a "host home" model was strengthened as families took care of those in their homes with little exposure to external risks. Online communication and other virtual platforms provided added opportunities for oversite, extended activities, and connection to the greater community while at home. Many hope that the technology used and focus on experiential activities will be further embraced and enabled since they have allowed for additional opportunities and creativity.

Best of all was the reminder lesson about the importance of our commitment to those who we serve. Our community has showed its creativity, resilience, and perseverance during this unprecedented time. We are all proud of our leaders, staff, families, and supports. It is thanks to them that we have made it this far through the crisis and are optimistic that we will successfully navigate what is still to come.

Rachel Boynton

Rachel Boynton CM&AA

Managing Director

As Co-Founder of LifeShare, a multi-state human services and healthcare organization, Rachel has a unique background of over 20 years of successful operational and executive experience, in addition to an MBA in Healthcare Management. She began her professional life as a home care provider, an experience that created the foundation for the innovative quality and success of LifeShare, while also changing her life. At LifeShare, she managed their Operations (Adult Day/Residential; Child Therapeutic Foster Care; HCBS; Child Therapeutic Day/Diversion Services, and Educational Programming), Finance, HR and Quality Assurance (facilitating COA accreditation and policy/procedure implementation). After selling LifeShare to Centene, Rachel remained during the transition of management and helped to provide outcome measurements and COA compliance reporting. At VERTESS she is a Managing Director providing M+A advisor and consultant services, specifically in the I/DD, behavioral health and related healthcare markets, where systems are rapidly evolving, and providers are striving to adapt strategically to diverse challenges.

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