Adapting to Manage a Crisis: How the PCC Tailored Care to the I/DD Community
Written by: Daniel Baker | Published: 6/22/21
Adapt. Transform. Support. These words that come to mind when we reflect on how the Montgomery County community responded to COVID-19.
Perhaps nothing better encapsulated the multifaceted response to the pandemic than how the Primary Care Coalition [PCC] supported the Montgomery County Department of Aging and Disabilities in helping group homes adapt their caring practices for individuals with Intellectual and Developmental Disabilities [I/DD].
The State of Group Homes in Montgomery County Pre-Pandemic
The County’s 31 service providers run 363 group homes, each of them housing 2 to 4 individuals with I/DD, and employ roughly 2,500 Direct Support Professionals [DSPs] who work in these group homes, providing 24/7 support. Due to the congregant living situation, the population’s high-risk for morbidity and mortality, and DSPs working in multiple group homes, a highly transmissible virus poses a major threat.
Dr. Greenberg sees a lack of understanding about what it means to have I/DD. “If I tell you my son has a developmental disability, people don’t necessarily understand what that means or the challenges that go along with that,” Dr. Greenberg said, recounting the process of highlighting the community’s needs to key decision makers and public health leaders.
This brings us back to the summer of 2020, when COVID-19 ran rampant through the County. Dr. Michael Greenberg, a prominent physician and father of someone with I/DD, joined with the InterACC – an advocacy group for people with I/DD -- to ask the Montgomery County Council for help.
The I/DD Group Homes weren’t set-up to provide the level of infection control necessary during a pandemic. They also lacked a systematic mechanism to acquire and use personal protective equipment [PPE]. Interpreting the ever-changing medical guidance also posed a challenge. So the Council brought in the Primary Care Coalition.
Turning to the PCC was an easy decision for Montgomery County. Decades spent fostering strong relationships within the community and collaborating between sectors positioned the PCC to be effective in supporting the group homes in building their capacity during the pandemic. "We make health care happen,” said Faith Makka, Project Director for the newly formed I/DD Group Home Collaborative. Dr. Greenberg quickly became the project’s Volunteer Medical Director.
At the national level, as plans to mitigate the spread of COVID-19 were drawn and delivered, “Those with I/DD, they were off the map; not even mentioned in the priority group,” said Dr. Greenberg. “DSPs weren’t even included in priority lists for people who could travel and get tested!”
At the County level, the response was much better. Dr. Greenberg emphasized the work that he and the I/DD community have been able to do with Montgomery Council Councilmember Gabe Albornoz’s office throughout the years. The PCC is proud to partner with the County and with our service provider partners when the needs of an underserved population must be met
Collaborating with all the relevant stakeholders, the PCC transformed how these facilities supported their vulnerable residents and employees, protecting them against a deadly virus transmitted via aerosols. The PCC helped service providers create a hybrid of their existing social model which focuses on assisting individuals with I/DD with their day-to-day activities, and a medical model, which is more akin to clinics or hospitals, to care for both residents and the DSPs who care for them.
Makka’s team created policy and procedure manuals for the big three “buckets:” Testing, Infection Control, and PPE. These manuals helped translate the broad guidance being issued by the state and higher levels of government to operational realities on the ground. "In the same way that people with I/DD aren’t recognized as an entity, many guidelines don’t address them. The CDC guidelines are limited. There’s limited medical guidance,” Dr. Greenberg explained.
Just like in the broader community, proper testing allowed service providers to track the problem and improve care. But this I/DD project is dealing with a population with a host of issues, as Dr. Greenberg outlined. "Some people with I/DD won’t wear a mask, or they have tactile issues. Maybe they scream or yell. Maybe they can’t stand in line for a while.”
That certainly doesn’t work with what mainstream testing centers were rolling out. And that’s why the PCC offered training for COIVD-19 testing; tapping into established connections to acquire County resources to set-up testing at group home facilities. As Makka described, the PCC also led “infection control trainings to understand how to disinfect and appropriate ways to reduce the risk of spread and increase prevention and control measures.”
Remember, the group homes weren’t designed to confront something like COVID-19. To ease that process, Makka recruited Jessica Hairston to fill the role of Logistics Manager for the I/DD Group Home Collaborative program. Hairston saw a “huge need for learning in the I/DD community to learn basic PPE and health care tactics, especially when it comes to something as airborne and dangerous as COVID-19.”
The PCC hosted PPE 101 trainings for everyone in the group homes, from the executives to the DSPs on the ground. Information surrounding best practices changed nearly as quickly as the virus spread. Hairston ensured that information was disseminated in a clear and concise manner. DSPs care for individuals who can’t take care of themselves, so if that meant sending multiple newsletters to the group homes each week or leading multiple training sessions on the same topic, then that’s what was necessary. Learning how to acquire PPE at the height of the pandemic posed a big challenge for group homes. That wasn’t something the homes had to worry about before.
“Of course when they were caring for individuals, DSPs wore PPE, but they lacked the knowledge and understanding of how to order PPE – identifying legitimate sites, avoiding counterfeit or low quality PPE – and how to procure it,” Hairston said. Like many other health care providers at the start of the pandemic, Dr. Greenberg initially had to resort to home-made PPE. “When COVID-19 first started, even if you were a physician, you couldn’t get a N95 mask, let alone for DSPs…Before working with the PCC, I was literally making these in my garage,” Dr. Greenberg said. “I got Deer Park to deliver 200 cases of water to make face-shields/masks.”
“Each agency started to figure out their own way to get PPE. It depended on someone’s contact – maybe it’s a person in California who had access to supplies coming out of China,” Callahan said. And yes, they relied on their own hand-made cloth masks at the beginning of the pandemic.
At a time when everybody was making gloves, masks, and face shields – Hairston’s goal was to find top-quality PPE at a reasonable price. “These [group homes] aren’t large corporations. They didn’t have a line-item in the budget for this expense; PPE that could arrive in 48 hours,” said Hairston. She quickly found two options for the I/DD Group Home Collaborative members; one for urgent PPE needs – in case of an outbreak that same day – and an alternative for long-term planning purchases. Throughout the program the PCC hosted bi-weekly meetings to, as Makka put it, “instill a culture of learning through crisis as well as share best practices and lessons learned.”
Callahan – speaking for Compass, Inc. and not all of Montgomery County’s group homes – lauded both the learning collaborative as well as the access to Dr. Greenberg’s wealth of knowledge in field. Perhaps more importantly, “the PCC legitimized the issue, not just within the county, but the state,” said Callahan. “It allowed more traction and discussion for people outside the I/DD community to address COVID. After helping acquire PPE, it was having DSPs designated as essential health care workers.” Dr. Greenberg, along with the PCC, even led the charge in classifying DSPs as part of 1A priority for the vaccine, Callahan added.
Adaptive management continues as the pandemic is far from over. Resources are pivoting to the vaccination of residents and staff. In fact, the group conducted a vaccination clinic for individuals with I/DD, at the end of April.
Whether the group homes are looking to vaccinate residents or plan for the next disaster, it all comes down to preparation says Hairston. “Make sure that you have PPE on hand, at any time. If you don’t, do you know how to find quality PPE? Just because Amazon can get it to your doorstep in 3 hours, doesn’t mean it’s of good enough quality.”
Hairston emphasized that the Collaborative was created to support both the residents and staff in these group homes. In short: Are we supplying them with everything they need to stay safe?
This, Dr. Greenberg adds, is where the PCC excels. “The teamwork and just the communication, the efficiency. Everything just got done. The ability to problem-solve, coordinate, and implement new policy and procedure, almost seamlessly was really impressive to me.”
As we shift from crisis response to post pandemic recovery, PCC is anticipating what the future holds. “Now we’re thinking of sustainability. We’re not waiting for news to come in and recommendations to come to us regarding booster shots for vaccines. We’re making sure that folks can continue to access vaccine resources beyond the lifecycle of this project.”
From the patient perspective, Dr. Greenberg noted the rising number of people with I/DD -- from 1-in-300 to now more like one-in-50/60 as a cause for concern. To truly achieve long-term sustainability beyond the pandemic, Callahan is optimistic that a community long-overlooked by society, doesn’t take a back seat to others as has been the status quo. “The hope is that people don’t forget the essentialness of people, and that it doesn’t take another disaster for them to remember us."