The #ForgottenFaces of the COVID-19 Pandemic

Monday - May. 18, 2020

Group of people with hand made signs and posers outside of home.

A little over a year ago, I was moving from Los Angeles to Kansas to take a position as the new CDDO Director for Johnson County. During the COVID-19 pandemic, I have been afforded the opportunity to grow with this community as it becomes a stronger, more united community that is leading the way in the state of Kansas to support our most vulnerable populations.

This pandemic has had a profound impact on the IDD community. As we all work to keep staff and the people we support safe, we are asking you to remember the forgotten faces in this crisis. Through my work at the CDDO, I’ve seen firsthand how COVID-19 has fundamentally changed our world and how the IDD community has been overlooked on a national scale.

The CDDO is the single point of entry for residents of Johnson County with an intellectual or developmental disability who wish to access IDD services. Staff determine eligibility for the IDD waiver and help with supports while you are on the waiting list. When you receive funding, you’ll have more 70 day and residential providers in Johnson County you can choose from for services. The CDDO works to make sure you have the choice to live, work, and attend day programs or receive case management with a team of professionals who meets your needs. As needs change, we also ensure that you have the choice to change providers when and if you wish. It’s important to understand that the CDDO will be with an individual for their entire life.

The CDDO works closely with all providers to guarantee that they have the tools to adhere to local, state and federal law so every person on the IDD waiver in Johnson County gets to live the life they choose to their fullest potential in a safe, supportive environment. The providers in our network are passionate about providing quality services and advocacy for people with an IDD diagnosis. I am thankful I get the privilege of working with such a caring, competent and passionate group of people.

In March, we saw exactly just how caring, competent and creative these service providers are. When the Johnson County community had its first few cases of COVID-19, our providers immediately jumped into action to provide for the safety and health of the people we serve. Each provider developed plans and protocols to safeguard people’s wellbeing and to support people in service during this public health crisis. While this health crisis has been an unprecedented time and no one is trained in how to manage a pandemic; our affiliates worked together to develop plans that provided for the safety, dignity and respect of the people we serve. We all know how challenging navigating COVID -19 has been for each of us personally; the people who live in group homes and attend day services in Johnson County also had the same challenges we did. Affiliates have been wearing multiple hats to provide for each person’s individual needs during this crisis.

While many of us have been struggling with staying at home, providers throughout Johnson County found creative ways to structure days at home. One of those providers is Life Centers of Kansas. Life Centers’ Management and Administration Team all participated in a parade to each of the residences where individuals in their services receive support. They spent about four hours driving to, and parading past, each of the houses. The people in service came out to greet them, wave and share their creative posters and decorations outside the houses. They were quite the sight – 10 cars driving in a well-disciplined line, through south Johnson County with emergency blinkers on, some decorations, an American flag flying proudly and a few dogs along for the ride! A few community members even joined the procession in some of the neighborhoods!

collage of staff assisting individuals with tasks.

The provider community would not be able to provide these services without their staff. Direct support professionals work around the clock to ensure the people served have their daily needs met and are safe. While their work has been deemed an “essential service,” we have seen throughout the country entire shifts of group homes and assisted living staff walk off the job and quit due to the pandemic. The staff throughout Johnson County have shown up to work, day in and day out, through this especially challenging time. Many have volunteered to work more than they typically do so the people they serve are taken care of. The pandemic has caused specific challenges to hiring and training new staff, not just in our community, but across the nation. This has caused increased overtime costs to our provider network. The rates that our providers are paid to provide these services do not take into account overtime costs; this has caused a significant strain on our network. Not to mention agencies that provide day services and work opportunities for the IDD community in Johnson County. 

To minimize exposure to COVID-19, many of these day-service-only programs tried to stay open to serve people who had nowhere else to go; however, the cost was too great to continue providing this essential service and they temporarily shut down. A recent national study by Avalere Health found that on average, businesses across the country providing these essential services have enough cash on hand to keep these businesses afloat for one month without additional funding. That is especially concerning to all of us as these services are so essential to approximately 3,000 people and their families in Johnson County alone. 

Like all of us, IDD service providers and people in service are looking at how to slowly return to normalcy while keeping everyone safe. These are hard choices that everyone takes very seriously. The CDDO and provider network will work collaboratively to continue to provide the best possible services in Johnson County. As we see day service programs and people with an IDD return to their jobs; we are educating each other on what the “new normal” may be for the days ahead. This includes innovative ideas to ensure that each person lives a life in their community that they wish. 

JCDS’s phased plan for reopening is in line with what most affiliates are doing as a way to bring back some day services, but in a limited capacity, that is mindful of social distancing and other universal precautions. As we hear so much about the sacrifices front line doctors and nurses are making; I encourage you all to remember the DSPs throughout Johnson County who are making similar sacrifices. 

We typically do not hear about them in the news; however, they continue to do their job in a way that keeps people in our community safe and having as much fun as possible during the stay-at-home order. Unfortunately, our DSPs and the people they serve are often the forgotten faces of this public health crisis. As many of us are now getting our groceries delivered in order to stay at home; direct service professionals are working on the frontlines in our group homes and day programs with one of our most vulnerable populations in Johnson County. 

Sixty-eight percent of organizations nationally that provide these services reported that they have had to close one or more service lines due to the pandemic, resulting in an average loss of revenue of 32%. This revenue loss is also what many of our providers in Johnson County are dealing with as well. These revenue losses jeopardize services in Johnson County and will not allow people with an IDD to live the life they choose.

As we advocate for IDD service providers and the people they serve, we hope you will join us to elevate the stories of the IDD community and these essential workers.

Learn more about the #ForgottenFaces Campaign from ANCOR to see how you can get involved and help make a difference.


About the Aurthor

Mandy Flower, CDDO Director for Johnson County Developmental Supports

Mandy Flower is the CDDO Director for Johnson County Developmental Supports. She has spent most of her life working in different capacities serving individuals with a developmental disability. A Kansas native, Flower has worked in a variety of roles in Kansas and California serving those with an IDD diagnosis. Mandy holds a bachelor’s degree from the University of Kansas and Master’s degrees in Public Administration and Counseling from Wichita State University.