Collectively Supporting Behavioral Health of People Living With Disabilities During COVID

February 23, 2022 | 28:01 minutes

Adults with disabilities are reported to experience more mental distress than those without disabilities. Mental distress in this population is associated with poorer health behaviors, an increase in health services use, mental and behavioral health disorders, and reduced quality of life. In particular, the pandemic has spotlighted a need for improved healthcare delivery systems and public health response strategies as COVID-19 has exacerbated health disparities in people with intellectual and developmental disabilities (IDD).

In this podcast episode, Alison Beam (alumni-PA) and Kristin Ahrens (deputy secretary, Pennsylvania Department of Health) offer cross-agency perspectives on the challenges and experiences they faced addressing the complex needs of people with IDD during the COVID-19 pandemic. They also share strategies to leverage state Medicaid data to better understand the impact of COVID-19 on the health of people with IDD, along with how cross-agency data-sharing can provide a more comprehensive look at statewide trends and inform decision-making in current and future pandemic response efforts.

Show Notes


  • Alison Beam, Former Secretary of Health, Pennsylvania Department of Health
  • Kristin Ahrens, Deputy Secretary, Office of Developmental Programs, Pennsylvania Department of Human Services



This is Public Health Review. I'm Robert Johnson.  

On this episode: the pandemic makes an impression on critical public health programs in Pennsylvania, and how that might benefit its residents living with intellectual and developmental disabilities.  

It's really a hard balance to strike when you're trying to commit yourself to getting as many folks vaccinated as possible; but then, also understanding that to do that—and reaching certain pockets of our population—is going to require that individualized level of care.  

I am hopeful. I think the awareness has been raised in a way that will continue. We were forced to use remote and telehealth at a scale that we previously hadn't been, and I do believe that those things will ultimately really support vulnerable populations like the IDD population.  

Welcome to Public Health Review, a podcast brought to you by the Association of State and Territorial Health Officials. With each episode, we explore what health departments are doing to tackle the most pressing public health issues facing our states and territories.  

Today, how Pennsylvania was able to continue serving people living with intellectual and developmental disabilities during the COVID-19 pandemic. We examine the changes to programs and processes that kept services flowing even during the pandemic's worst months. 

Kristin Ahrens is Pennsylvania's deputy secretary for the Office of Developmental Programs. She'll be along later to tell us how the crisis ultimately will make services for the IDD community stronger.  

But first, we hear from Alison Beam, former Pennsylvania acting secretary of health, about the state's pandemic-related adjustments and a vaccine clinic model developed especially for the IDD population.  

So, stepping back before we get into the discreet IDD implications, the thing to remember about the pandemic is it really challenged any circumstance whereby humans were gathering in-person, right? So, it didn't matter whether it was a concert, a store, a school—wherever we had routinely lived our lives in a forum where we were interacting with others, we all had to figure out how to go about doing that more safely. And people with intellectual disabilities more often live in group homes, they use shared transportation, they are exposed to people outside their households including their therapists and their provider; and that is on top of having struggles with precautions like mask wearing and social distancing.  

And so, care for our intellectually and developmentally disabled population was particularly challenged, and the data actually bore that out; having an intellectual disability was one of the highest independent risk factors for contracting COVID-19, even when controlling for race, ethnicity, and other variables. And so, the challenge always became how do we continue to protect this population and keep them safe while also delivering the care that they need, knowing that that could potentially add risk to their day.  

You had to, I assume, make a lot of changes to the way you served that community because of the impacts of the pandemic. Can you outline some of those?  

Sure. So, many of those changes were really trying to strike that balance of being able to still give continuity of care without putting undue risks on both the individual receiving services but also the individual that's administering the services. We wanted to make sure both sides of the equation were as protected as possible.  

And so, in thinking about the evolution of care, it's the prioritization of the personal protective equipment—making sure that the right PPE was given to this population and their caregivers.  

It's thinking about access to tests. The COVID testing experience, particularly depending on what type of test you get is very different for folks; and so, thinking through how somebody might feel about a PCR test being administered on them versus somebody with intellectual or developmental disabilities having a PCR test—it's a different set of hurdles that you have to think through to make sure that they have an understanding of whether or not they're contagious.  

And then, ultimately a lot of this came forward with the vaccination rollout and making sure that the vaccination experience was something that was not—while it was rolling out a very limited commodity to the masses, you had to also think about it on an individualized nature given some of the restraints and constrictions when serving the intellectually disabled population. 

How does the messaging change when you're communicating with people in this group? Is it different at all and, if so, how? 

So, one of the aspects that we've really appreciated is being able to have physicians and other clinicians come to the table to challenge our thinking on how to work through communicating with folks, because education about COVID broadly—the right precautions and particularly the vaccination—has been a challenge no matter the audience.  

But when you are dealing with the IDD population, thinking about how to step back from one speed at which you are speaking with individuals, thinking about how a mask could hinder how something's being communicated if you're using some sort of verbal means of communication. But also, thinking about how you can get a little creative, right—think about the right level of pictures that you can have on hand to start illustrating to folks what's going to be happening. Whether or not you're talking to somebody who is recently diagnosed with COVID and what they need to do to keep themselves and their families safe, or whether or not going into get vaccinated.  

I think you have to challenge kind of the normal physician experience and make sure that you're being more adaptable to the needs of the IDD population. 

Of the changes that were made in servicing this group while you were there, what are you most proud of? What worked the best? What do you like to talk about?  

So, it's a specific incident but it's one of the pieces that I think was really a hallmark of our ability to not just work with partners in a new way but also deliver a pragmatic result.  

We had an opportunity to work with some fantastic researchers down at Jefferson Hospital in Philadelphia that were working on precisely how the IDD population was impacted by COVID, but then also what are the measures that we need to take to be able to have them access care properly, including vaccinations.  

They provided us with the elusive holy grail during the pandemic rollout, which is data. They were able to give us data to inform the ability to prioritize the IDD population within our vaccination rollout. They showed us the statistics about the IDD population contracting COVID, being hospitalized from it, and, tragically, potentially passing away from it. With that data and the prioritization of the vaccination rollout, we also were able to then have vaccination clinics that were specifically tailored to the needs of the IDD population.  

And so, if you think back to how it was initially rolled out, it was really about volume, right? You needed to be able to get the most folks vaccinated as quickly as possible. High-volume sites don't necessarily translate to the IDD population. And so, Jefferson was actually able to set up clinics that were discreetly tailored to the needs of this population. So, whether it's not having a long wait time, whether it's making sure that there are squeeze balls nearby to be able to distract during the actual vaccination process, whether it's that modified educational material that we spoke to—all of those aspects were brought together to a vaccination clinic where we were able to vaccinate the IDD population in a much more comfortable way.  

And while it didn't necessarily conform to that volume-driven influence that I think a lot of us were focused on at the beginning of the vaccination rollout, that's something that we can actually translate into our daily thinking about the vaccination process—moving on when it's not such a massive undertaking—but rather how to reach that on an individual nuance level. I'm pretty proud of Pennsylvania truly, and the partners that we've had to be able to deliver on that.  

You're talking about providing a quality experience versus just trying to run people through as fast as you can.  

Absolutely, and understanding the needs of the individual. It's really hard balance to strike when you're trying to commit yourself to getting as many folks vaccinated as possible, but then also understanding that to do that—and reaching certain pockets of our population—is going to require that individualized level care.  

You just touched on this a moment ago, but I want to ask it anyway. These changes make the program stronger whether or not there's a pandemic, right?  

Absolutely. I think not just the program, but it also makes us stronger as a state government; because we have to remember who we serve every day and having a reminder that maybe a population that isn't in the traditional wheelhouse of our Department of Health, nonetheless we have counterparts over at our Department of Human Services that we need to be lockstep with and thinking about them at all times we're moving forward with progressing the health of the commonwealth. This puts them front and center, and I think those are legacies that hopefully stretch far beyond the COVID-19 pandemic.  

And how about helping other populations? Did you learn anything from this experience that could help people who aren't dealing with this type of disability, but maybe need some other focus?  

Absolutely. So, I think lessons learned from the pandemic are tremendous.  

But if you think about it in the stakeholder factions, we have a healthcare hub in our commonwealth instead of a consolidated state agency—which we could have an entire other podcast on whether or not consolidated state agencies are good or bad. But either way, it's inevitable that if you are going to have a structure like Pennsylvania where you have a department of human services who really oversees a population like IDD but you have a department of health that is potentially making decisions that impact that population, the closest coordination possible was our goal at all times. And this stretched to our Department of Drug and Alcohol programs, our Department of Aging, all of these different constituencies needed to be lock-step with our department of health. And in that health hub, we had already created a lot of the existing relationships.  

What's interesting now is because of the pandemic that circle got wider, and we're now coordinating—if you think about a non-traditional agency for healthcare-related purposes—our Pennsylvania Emergency Management Agency, lockstep; our Department of Military and Veterans Affairs, given that they run some of our nursing homes that actually serve veterans. All of these entities that maybe weren't within our traditional health purview also became lockstep with us, and that's the level of coordination that's really necessary. 

Hopefully we don't have another pandemic, but ultimately I think it's inevitable; and so hopefully the guidance and the lessons learned that we can give is that close coordination is necessary for all of those different populations in serving them.  

Those are the partnerships that we wanted to talk about. They've obviously expanded, but have they expanded beyond government entities as well?  

That's another piece of being able to come into those roles and say humbly, "We are not going to be, ourselves, the experts in how to respond to COVID-19. We need a big table."  

And so, from the very onset of the pandemic, we had different stakeholders convening that we would work with. And whether they were more clinical in nature, whether they were specific to a certain topic like the vaccine, or whether potentially even more economic- and business-driven given a lot of the COVID-19 ramifications—all of those different tables could have been convened by government, but were mostly composed of external stakeholders, and they were some of our most valuable partnerships.  

And the question becomes, as we evolve out of COVID-19, how do we continue that level of private and public sector partnership? Because I think there was just a dependency that both built on each other that is truly a healthy way for government to work. And so, there were a tremendous amount of expertise and partnerships brought to those tables that hopefully are going to be something that can exist without necessarily having the pressure of crisis response on them at all times. 

Wrapping up, how encouraged are you about the progress that Pennsylvania has made on issues important to the IDD community? And then, how optimistic are you that you can continue these new and improved approaches in the state? 

Incredibly heartened at what has been accomplished under this administration. And so, you know, the governor is going to be in his last year here and he has not only prioritized the population, but he has really empowered the right leadership within our Department of Human Services, but then our Department of Health, to be able to support folks as they should be. And that is heartening. 

I remain ever the optimist. I'm being able to continue prioritizing folks properly and allow ourselves to think about as we transition to a new governor—in less than a year, at this point—how are we going to not have a break in continuity, not lose these lessons learned, and prioritize the IDD population for the new governor coming in and also challenge them to make equally as progressive moves as Governor Wolf did. That's, I think, a responsibility of all of us who have not only been working under this administration, but also—as we think about how we're transitioning into new positions and the like—to continue saying sharpen our advocacy, but also informing the next round of leadership at the state level.  

Pennsylvania's deputy secretary for the Office of Developmental Programs, Kristin Ahrens, lives in the details. She explains how things have changed for the IDD community the last two years.  

So, we're now in our third year of the pandemic and I suspect you've made changes, like many others have, to your programs to improve access. Can you tell us how you've adjusted to better serve people with IDD concerns?  

I certainly can. We have—in terms of some of the changes that we made—under the Centers for Medicare and Medicaid Services, have some emergency procedures that we were able to use and, through those, what's called an Appendix K emergency procedures. We were able to allow a number of different flexibilities, some of which will have some lasting impacts within our system.  

So, we were able to do things like make adjustments to staff qualifications that allowed for greater portability. We were able to lift benefit caps and plan caps. We were allowed to provide services remotely, so behavioral support services or targeted case management or supports coordination, some of our day services. 

We also had, through the CARES Act, there was an interesting provision in there. Historically, home- and community-based services were not allowed to be provided in hospital setting. It was not compensable for a provider of home- and community-based services to send a direct support professional to help someone while they were in the hospital. The CARES Act changed that federal rule, which has been a really important change. And that wasn't just for the pandemic—that will continue beyond the pandemic.  

So, we have been working with CMS to change our permanent policies in Pennsylvania to allow for those direct support professionals in hospital settings, and to continue the use of those remote services. They don't work for everybody; we did a lot of surveying—about 10% of our population really benefited from that change to remote home and community-based services. But for the ones that did, that was a very, very important change. And I think the experiences that we had not just with remotely delivered home- and community-based services, but the experiences with telehealth—I am very hopeful that that will result in long-term adoption. 

For the IDD population often, physicians and specialists may struggle with really understanding and meeting the needs of a person with very complex needs who has IDD. The availability of telehealth really could expand greater access to the people who have this specialty in IDD and make sure that where we have rural areas, where we don't have those specialists, that people still have that access to that specialty.  

So, I'm really hopeful that health systems will look at building in expertise into their systems through some of these remote and telehealth opportunities that the pandemic provided for us and the experience that it gave us.  

There has been additional federal funding for home- and community-based services. Have you been able to collect any of those funds and use them to help this population?  

We most certainly have.  

So, to start with, during the whole pandemic with the CARES Act, there was enhanced federal match that was approved for home- and community-based services that, from the beginning of the pandemic, really helped to stabilize the provision of services. So, that was critical. 

Most recently, with the American Rescue Plan Act, Pennsylvania is receiving—will receive—about $1.2 billion for home- and community-based service for enhancing, expanding, and strengthening. And that already, I think, is—we've already been able to get some of that money out the door. And the impact on systems of care, particularly related to staffing shortages, we've got some additional resources because that federal funding to shore that up.  

So, the staffing crisis is most certainly hitting all of our human service systems, very much hitting home- and community-based services. We have known, you know, that we were on sort of a demographic crash course for the last 30 years. We've been watching who needs support and care in their homes and who those typical caregivers, direct support professionals, direct care workers are. So, we've known this was coming. The pandemic exacerbated it in a way I don't think anyone could have anticipated.  

So, some of the things that we're looking to use those additional federal funds for are, we as home and community services, we really have to expand the use of technology. There are a number of things that we currently do through direct support professionals that could be done with technology. So, I think there's some ways that we can really improve the quality of services and, in some cases, relieve some of that staffing burden.  

One of the other areas that we're very much focusing on is raising the quality of the service through credentialing of our workforce. So, we're working on some ways to expand the use of credentialing, and ideally we get to a place where we're tying pay to credentialing of our workforce.  

How are you leveraging data and data-sharing partnerships in this effort, and what have you learned through the process?  

So, we came into this pandemic, within home- and community-based services for the IDD population, we really didn't have systems that contemplated handling tracking of something like COVID-19. So, we were in a position early in the pandemic to take a look at what systems we had that we were using that we could leverage to track COVID-19. So, we were able to do that. We built within two existing systems that our whole provider community had access to, we modified those that we could have data on COVID-19 exposures and infections. And what that meant was that we actually then were able to have some situational awareness that we could then do appropriate intervention related to that.  

So, the data sharing partnerships. In Pennsylvania, we have a department of health that is separate from the department of human services, and one of the areas where the data sharing between our two departments was really critical was around the vaccination allocation plan and the actual—once vaccines started coming to the state from the federal government—the actual allocation of that vaccine.  

So, because we had good data on mortality, infection, hospitalization rates, we were able to work with our department of health to really inform the allocation plan, and then the actual allocation of that vaccine to make sure that we were getting it to our population as a prioritized population. We knew from our own data the vulnerability of the population—that Jefferson study I mentioned certainly helped confirm that and tell that same story.  

The other area I would say is because we in Pennsylvania, our system for IDD, we directly administer it. It's a fee-for-service system. So, we actually have access to rich claims data. It's a great source of data where we can really understand patterns and trends within service provision.  

One of the areas I very much wish we had better, faster access to data is encounter data from our physical health managed care plans. All of our managed care plans, that encounter data is always a little slower to come to our system, and it's been so critical in terms of understanding and responding to this pandemic. That's an area that I hope over time we improve our ability to get those encounter data much more quickly so that we can use it to make policy decisions and use it in a situation like COVID pandemic, where we are in need of good data to be making timely decisions and acting on them. 

Explain how you've included health equity into all of this.  

I think one of the things that has made our population so vulnerable coming into this is that our population came in with incredible disparities in terms of health: higher rates of hypertension, diabetes, obesity, the things that we know made people more vulnerable.  

The other thing: in terms of our population—so, just in those health issues, we have inequities coming in—we have 95% of people who are receiving home- and community-based services. So, they're reliant on the healthcare system that the general population relies on; and that can be a challenge because there's generally a lack of practitioners who specialize in IDD.  

We, of course, have concerns about bias that could impact the quality of care. Harvard Gazette recently published results of a survey they did; and in that survey about 40% of surveyed physicians reported feeling confident in their ability to provide the same quality of care to patients with disabilities as other patients. So, that kind of bias is certainly a concern when we're thinking about health equity and gives us obviously some clear places to be doing some interventions. 

We have, within our office, a number of strategies related to health and wellness. The progress certainly set back a little bit during the pandemic, but I do think the pandemic has also sort of raised the awareness of the health equity issues that our population faces.  

I wanted to ask you that very question. The pandemic has been horrible for everybody in many different ways; but in terms of the work you're doing, has it allowed you to innovate? Has it made your program better, in the end?  

I think it will. And for that reason, I do think that this pandemic—when I think about what Katrina did in terms of raising awareness when it comes to natural disasters and our emergency response for people with functional needs, Katrina really was, I think, that awakening for our nation. I think this pandemic is the same. I think it is a parallel just in terms of thinking about how vulnerable health inequities make us for lots of marginalized populations, including the IDD population.  

I think we have learned because we had to really adapt. There are a number of areas of learning that we will really take away from this. So, when I think about resiliency and planning for resiliency post-pandemic, we have to address the root problem—that people with IDD experience extraordinary health disparities and challenges to accessing appropriate care. So, I think we've got to address that access to both the access to quality care.  

And then, I think we also have to look at our continuity of operations plans generally. And this is, again, this, I think, is what Katrina did for us a little bit in terms of natural disasters. Our continuity of operations plans really need to better account for the full scope of populations. So, when we're talking about health systems, we're talking about hospitals, we're talking about all of these emergency management systems, we really have to be looking more deeply at the full scope of populations and those needs. And those plans, I think many of those plans were more based on addressing localized or regional disasters or short-term disasters—that, obviously, was also wholly inadequate given what we now know is possible thanks to COVID-19. 

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For Public Health Review, I'm Robert Johnson. Be well.